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Bones of Strengthour 2023 achievements

435 newpatientsthis year21Dear HPP Friends,As we look back on the past year, I am so proud of the progress we've made together at SoftBones. Our mission is to provide information, education, and support for those living withhypophosphatasia (HPP), their families, and caregivers. It continues to drive our efforts andinspire hope.This year was one of immense progress. We sent over 400 information packets to newlydiagnosed or suspected individuals, reaching 19 countries, including the USA, Italy, Portugal,the UK, Germany, Canada, and Israel. Our community now spans 41 countries, connectingfamilies globally to share experiences and support each other.Our commitment to advancing research and education on HPP grows each year. We awardedover $25,000 in grants, including the 11th Maher Family Grant to Dr. Claire Stenhouse atPennsylvania State University. Dr. Stenhouse's research focuses on respiratory complicationsin infants with HPP and promises significant breakthroughs. We eagerly await her findings.We also launched significant initiatives to empower our community. The myHPP app,developed with input from patients and physicians, will be introduced in 2024 to help individualstrack their health and contribute to HPP research. This innovative tool enhances patient careand aids in better treatment outcomes.We saw amazing progress in our programs and services. Our Hippo Squad continues to grow,with 194 members and 122 families actively engaged. We awarded 35 travel grants and oneresearch grant, and our National Patient Meeting saw 118 attendees, including over 40 families.This annual event continues to highlight the importance of community and support.This year, our HPP Community mourned the loss of three dedicated individuals: Gerald Brandt,Dr. Philippe Crine, and Steven Bernstein. Their contributions to HPP research, patientadvocacy, and community support have left an enduring legacy.Our fundraising efforts also received remarkable support. Despite challenges, we raisedsignificant funds through our annual initiatives, including our first-ever Denim and Diamondsevent and the 15th Annual Golf Classic.We remain dedicated to supporting and advocating for the HPP community. With advances inmodern science, a cure is possible. We will continue to work closely with researchers andclinicians to unite the global HPP community and advance our understanding of HPP.Thank you for your continued support and trust. Together, we are making a difference.Deborah Fowler, President and Founder Soft BonesOUR MISSIONThe mission of Soft Bones, Inc. is to providevaluable information, education, and support forpeople living with hypophosphatasia (HPP), theirfamilies, and caregivers. The Foundationpromotes research on this rare bone diseasethrough awareness and fundraising efforts. ABOUT SOFT BONESSoft Bones is a 501(c)3 non-profit, US-basedpatient advocacy group dedicated to thecommunity of patients, caregivers, and familiesliving with hypophosphatasia.Soft Bones empowers the HPP community byraising awareness of this rare metabolic disease,providing hope by advocating for and fundingresearch, and connecting patients and the medicalcommunity to advance the understanding of HPP.We provide medical information and a supportsystem for patients and families with HPP.A cure is possible. With the modern-day science ofgene editing and gene therapy, we work closelywith researchers and clinicians to championcollaboration, reduce duplication of efforts, sharefindings, and unite the global HPP community. Wealso work to position HPP as a favorable subject ofresearch.Hypophosphatasia is a serious condition. Scientistsare still working to understand better the impact oflow alkaline phosphatase levels on the body. Whilethe hallmark of HPP is soft bones, as a metabolicdisease, the full impact is not yet fully understood.400 infopackets sentto newlydiagnosed orsuspectingHPPindividualsOver $25kawardedin grants

435 newpatientsthis year21Dear HPP Friends,As we look back on the past year, I am so proud of the progress we've made together at SoftBones. Our mission is to provide information, education, and support for those living withhypophosphatasia (HPP), their families, and caregivers. It continues to drive our efforts andinspire hope.This year was one of immense progress. We sent over 400 information packets to newlydiagnosed or suspected individuals, reaching 19 countries, including the USA, Italy, Portugal,the UK, Germany, Canada, and Israel. Our community now spans 41 countries, connectingfamilies globally to share experiences and support each other.Our commitment to advancing research and education on HPP grows each year. We awardedover $25,000 in grants, including the 11th Maher Family Grant to Dr. Claire Stenhouse atPennsylvania State University. Dr. Stenhouse's research focuses on respiratory complicationsin infants with HPP and promises significant breakthroughs. We eagerly await her findings.We also launched significant initiatives to empower our community. The myHPP app,developed with input from patients and physicians, will be introduced in 2024 to help individualstrack their health and contribute to HPP research. This innovative tool enhances patient careand aids in better treatment outcomes.We saw amazing progress in our programs and services. Our Hippo Squad continues to grow,with 194 members and 122 families actively engaged. We awarded 35 travel grants and oneresearch grant, and our National Patient Meeting saw 118 attendees, including over 40 families.This annual event continues to highlight the importance of community and support.This year, our HPP Community mourned the loss of three dedicated individuals: Gerald Brandt,Dr. Philippe Crine, and Steven Bernstein. Their contributions to HPP research, patientadvocacy, and community support have left an enduring legacy.Our fundraising efforts also received remarkable support. Despite challenges, we raisedsignificant funds through our annual initiatives, including our first-ever Denim and Diamondsevent and the 15th Annual Golf Classic.We remain dedicated to supporting and advocating for the HPP community. With advances inmodern science, a cure is possible. We will continue to work closely with researchers andclinicians to unite the global HPP community and advance our understanding of HPP.Thank you for your continued support and trust. Together, we are making a difference.Deborah Fowler, President and Founder Soft BonesOUR MISSIONThe mission of Soft Bones, Inc. is to providevaluable information, education, and support forpeople living with hypophosphatasia (HPP), theirfamilies, and caregivers. The Foundationpromotes research on this rare bone diseasethrough awareness and fundraising efforts. ABOUT SOFT BONESSoft Bones is a 501(c)3 non-profit, US-basedpatient advocacy group dedicated to thecommunity of patients, caregivers, and familiesliving with hypophosphatasia.Soft Bones empowers the HPP community byraising awareness of this rare metabolic disease,providing hope by advocating for and fundingresearch, and connecting patients and the medicalcommunity to advance the understanding of HPP.We provide medical information and a supportsystem for patients and families with HPP.A cure is possible. With the modern-day science ofgene editing and gene therapy, we work closelywith researchers and clinicians to championcollaboration, reduce duplication of efforts, sharefindings, and unite the global HPP community. Wealso work to position HPP as a favorable subject ofresearch.Hypophosphatasia is a serious condition. Scientistsare still working to understand better the impact oflow alkaline phosphatase levels on the body. Whilethe hallmark of HPP is soft bones, as a metabolicdisease, the full impact is not yet fully understood.400 infopackets sentto newlydiagnosed orsuspectingHPPindividualsOver $25kawardedin grants

2023WebsiteStats.org Our top Facebook post was honoring the legacy of Steven Bernstein 4,219 engagedFacebook users34Connecting with Impact: Our Social Media ReachIn 2023, we had 3,889 reactions and comments across Instagram, Facebook, and Twitter3,248 engagements on Instagram, & 431engagements on TwitterWe hit 700 followersin 2023 on InstagramOur Best Performing PostsRemembering SteveRare Bone Alliance POM: Cannon

2023WebsiteStats.org Our top Facebook post was honoring the legacy of Steven Bernstein 4,219 engagedFacebook users34Connecting with Impact: Our Social Media ReachIn 2023, we had 3,889 reactions and comments across Instagram, Facebook, and Twitter3,248 engagements on Instagram, & 431engagements on TwitterWe hit 700 followersin 2023 on InstagramOur Best Performing PostsRemembering SteveRare Bone Alliance POM: Cannon

Stories of Strength:56Soft Bones' 2023 Recap

Stories of Strength:56Soft Bones' 2023 Recap

Awareness DaysRare Disease Day is an annual global event to raise awareness about rare diseases as a public health concern.Held annually on February 28th, except during leap years, it serves as a platform to collectively raise our voices to promote equity, access to care, and therapies for people with rare diseases.This year, Soft Bones embraced the EURODIS theme #ShareYourColors, and members of the HPP community united and came out in full force! More than 100 HPP patients and families created new profile photos and shared pictures, videos, and their experiences through social media to raise awareness. Rare Disease Day 2023World HPP Day 2023 2023 marked the 75th anniversary of Canadian pediatrician Dr. John C. Rathbun's groundbreaking discovery of HPP. Since then, significant progress has been made in research and support for the HPP community, but our journey is far from over.On October 30th, we celebrated World HPP Day under the theme "Let’s Make Noise About HPP.” Soft Bones’s mission is to empower and equip patients and their caregivers with the resources and knowledge to advocate for themselves. By “making noise,” we aim to address the challenges of living with HPP and foster mutual support within our community. Our global HPP community gained momentum by raising awareness of HPP in many impactful ways.HPP Community Stepped it Up on World HPP Day In fostering communities near and far, we encouraged individuals to participate in our 2ndAnnual Cannonball Run, Roll, Stroll 5k. On World HPP Day, HPP communities fromIndiana, Massachusetts, New Jersey, and Florida had local meet-ups for an in-personCannonball 5K. Together, we took 312,500 steps towards spreading awareness for HPP,embodying our theme, Bones of Strength. We extend a huge thank you to all participants,Alexion, AstraZeneca Rare Disease for supporting this event and our HPP community. Strength and support as a group make a difference!87

Awareness DaysRare Disease Day is an annual global event to raise awareness about rare diseases as a public health concern.Held annually on February 28th, except during leap years, it serves as a platform to collectively raise our voices to promote equity, access to care, and therapies for people with rare diseases.This year, Soft Bones embraced the EURODIS theme #ShareYourColors, and members of the HPP community united and came out in full force! More than 100 HPP patients and families created new profile photos and shared pictures, videos, and their experiences through social media to raise awareness. Rare Disease Day 2023World HPP Day 2023 2023 marked the 75th anniversary of Canadian pediatrician Dr. John C. Rathbun's groundbreaking discovery of HPP. Since then, significant progress has been made in research and support for the HPP community, but our journey is far from over.On October 30th, we celebrated World HPP Day under the theme "Let’s Make Noise About HPP.” Soft Bones’s mission is to empower and equip patients and their caregivers with the resources and knowledge to advocate for themselves. By “making noise,” we aim to address the challenges of living with HPP and foster mutual support within our community. Our global HPP community gained momentum by raising awareness of HPP in many impactful ways.HPP Community Stepped it Up on World HPP Day In fostering communities near and far, we encouraged individuals to participate in our 2ndAnnual Cannonball Run, Roll, Stroll 5k. On World HPP Day, HPP communities fromIndiana, Massachusetts, New Jersey, and Florida had local meet-ups for an in-personCannonball 5K. Together, we took 312,500 steps towards spreading awareness for HPP,embodying our theme, Bones of Strength. We extend a huge thank you to all participants,Alexion, AstraZeneca Rare Disease for supporting this event and our HPP community. Strength and support as a group make a difference!87

National Patient Meeting | Arizona The 2023 National Patient Meeting was held over President’s Day Weekend, February 17-18, in Phoenix, Arizona. With more than 40 families in attendance, patients and caregivers had the invaluable opportunity to connect and share their stories. The event featured a robust day of presentations by renowned rare disease professionals, including Pamela Smith, MD (Phoenix Children’s Hospital), PeterTebben, MD (Mayo Clinic), Paola Genovese, MD (Phoenix Children’s Hospital), and ArieZakaryan, PhD (Phoenix Children’s Hospital). After an insightful and educational day,attendees enjoyed a creative and engaging art workshop.The 2023 National Patient Meeting was a wonderful opportunity to connect and learn more about HPP. The recordings from the meeting can be found here.118 attendees from morethan 40 families at theNational Patient Meeting109From Local to Global: Soft Bones Conferences, Seminars & MeetingsSoft Bones has helped patients from allthe countries Highlighted!Communitymembers in 41countries plusPuerto Rico455known HPPmutations

National Patient Meeting | Arizona The 2023 National Patient Meeting was held over President’s Day Weekend, February 17-18, in Phoenix, Arizona. With more than 40 families in attendance, patients and caregivers had the invaluable opportunity to connect and share their stories. The event featured a robust day of presentations by renowned rare disease professionals, including Pamela Smith, MD (Phoenix Children’s Hospital), PeterTebben, MD (Mayo Clinic), Paola Genovese, MD (Phoenix Children’s Hospital), and ArieZakaryan, PhD (Phoenix Children’s Hospital). After an insightful and educational day,attendees enjoyed a creative and engaging art workshop.The 2023 National Patient Meeting was a wonderful opportunity to connect and learn more about HPP. The recordings from the meeting can be found here.118 attendees from morethan 40 families at theNational Patient Meeting109From Local to Global: Soft Bones Conferences, Seminars & MeetingsSoft Bones has helped patients from allthe countries Highlighted!Communitymembers in 41countries plusPuerto Rico455known HPPmutations

Navigating Hypophosphatasia: August'sStory of Courage and Community SupportMercedes and Bryce Bartholomew’s journey with their son August began with excitementwhen they learned of their pregnancy in January 2020. Despite COVID-19, they excitedlycelebrated every milestone until an 18-week scan revealed that August’s limbs weresignificantly underdeveloped.Initially, doctors reassured Mercedes that August might just be a little person, but furthertests revealed severe skeletal dysplasia, fractures, breaks, and missing bones. Anamniocentesis confirmed hypophosphatasia (HPP), changing her pregnancy’s course,where she was seeing doctors weekly.With Bryce deployed overseas, Mercedes navigated frequent medical visits alone untilBryce returned early. While the family wished for short hospital stays, it was anything butthat. Mercedes was moved to a specialized hospital for better care for complexpregnancies. Upon birth, August required an extended hospital stay, heavy painmedication, and suffered from pneumonia.At four and a half months, August transferred to Rady Children’s Hospital in San Diego.There, his care improved, and the family could spend more time together without masks. Asuccessful tracheostomy and g-tube surgery made him more active and responsive,bringing smiles and laughter. August was a true rockstar at such a young age.At seven months, August faced another challenge when his skull began fusing prematurelyas a result of the Strensiq helping strengthen his bones, albeit just a bit too quickly for hisgrowing head. Neurosurgeons attached steel plates to expand his skull, a successfulprocedure that allowed for improved brain development. August's resilience was clear as hemoved from the NICU to the pulmonary floor. Bryce was now commuting for work whileMercedes stayed with their son, learning to care for him independently. The familycelebrated small victories, like taking August outside for the first time in his own stroller.After nine months, August finally went home on June 17th.1112Around his first birthday, the family discovered August could not hear. Despite this setback,hearing aids brought slight improvements to the family just before Christmastime. Fast-forward a few years to 2023, when August no longer needed his ventilator or G-tube. Hebegan crawling, taking steps, eating by mouth, and communicating by using sign language!He’s thriving in preschool and enjoys bath time.Soft Bones was crucial in providing resources and connecting them with a supportivecommunity. Soft Bones’ dedication to raising awareness, funding research, and supportingthose with HPP has been instrumental in August’s care and progress.August’s story shows how important organizations like Soft Bones are in supporting familiesand pursuing research for rare diseases, making a big difference for families like theBartholomews. You can read the full story here.Stories of Strength

Navigating Hypophosphatasia: August'sStory of Courage and Community SupportMercedes and Bryce Bartholomew’s journey with their son August began with excitementwhen they learned of their pregnancy in January 2020. Despite COVID-19, they excitedlycelebrated every milestone until an 18-week scan revealed that August’s limbs weresignificantly underdeveloped.Initially, doctors reassured Mercedes that August might just be a little person, but furthertests revealed severe skeletal dysplasia, fractures, breaks, and missing bones. Anamniocentesis confirmed hypophosphatasia (HPP), changing her pregnancy’s course,where she was seeing doctors weekly.With Bryce deployed overseas, Mercedes navigated frequent medical visits alone untilBryce returned early. While the family wished for short hospital stays, it was anything butthat. Mercedes was moved to a specialized hospital for better care for complexpregnancies. Upon birth, August required an extended hospital stay, heavy painmedication, and suffered from pneumonia.At four and a half months, August transferred to Rady Children’s Hospital in San Diego.There, his care improved, and the family could spend more time together without masks. Asuccessful tracheostomy and g-tube surgery made him more active and responsive,bringing smiles and laughter. August was a true rockstar at such a young age.At seven months, August faced another challenge when his skull began fusing prematurelyas a result of the Strensiq helping strengthen his bones, albeit just a bit too quickly for hisgrowing head. Neurosurgeons attached steel plates to expand his skull, a successfulprocedure that allowed for improved brain development. August's resilience was clear as hemoved from the NICU to the pulmonary floor. Bryce was now commuting for work whileMercedes stayed with their son, learning to care for him independently. The familycelebrated small victories, like taking August outside for the first time in his own stroller.After nine months, August finally went home on June 17th.1112Around his first birthday, the family discovered August could not hear. Despite this setback,hearing aids brought slight improvements to the family just before Christmastime. Fast-forward a few years to 2023, when August no longer needed his ventilator or G-tube. Hebegan crawling, taking steps, eating by mouth, and communicating by using sign language!He’s thriving in preschool and enjoys bath time.Soft Bones was crucial in providing resources and connecting them with a supportivecommunity. Soft Bones’ dedication to raising awareness, funding research, and supportingthose with HPP has been instrumental in August’s care and progress.August’s story shows how important organizations like Soft Bones are in supporting familiesand pursuing research for rare diseases, making a big difference for families like theBartholomews. You can read the full story here.Stories of Strength

From Diagnosis to Determination: Judith's HPP Journey14Judith is a determined woman who's faced health challenges with a positive outlook andunwavering strength. Her journey began in Northern Ireland in the early 1960s with adiagnosis of hip dysplasia, requiring her to be in a cast for the first year of her life. Little didher family know this condition was likely due to HPP.Throughout her childhood and adulthood, Judith experienced symptoms of HPP, such asdental issues and frequent fractures. A series of fractures, the discovery of low alkalinephosphatase levels, and extensive online research led her to a self-diagnosis of HPP.Eventually, she found the right medical professional and was clinically diagnosed withjuvenile-onset mild HPP.At nearly 59, Judith began enzyme replacement therapy (Strensiq), which brought aboutpositive changes, including improved strength, energy, and quality of life. Despite thechallenges, Judith emphasizes the importance of early diagnosis and awareness within themedical community, which is a true testament to her determination.Thanks to patient support groups like Soft Bones, patients like Judith have access tosupport, medical networks, a close-knit community, and ongoing research into HPP. SoftBones provides access to valuable resources, connects patients with a network of otherswho understand their journey, and advocates for advancements in treatment, making a realdifference in the lives of those affected by HPP. You can read the full story here.13

From Diagnosis to Determination: Judith's HPP Journey14Judith is a determined woman who's faced health challenges with a positive outlook andunwavering strength. Her journey began in Northern Ireland in the early 1960s with adiagnosis of hip dysplasia, requiring her to be in a cast for the first year of her life. Little didher family know this condition was likely due to HPP.Throughout her childhood and adulthood, Judith experienced symptoms of HPP, such asdental issues and frequent fractures. A series of fractures, the discovery of low alkalinephosphatase levels, and extensive online research led her to a self-diagnosis of HPP.Eventually, she found the right medical professional and was clinically diagnosed withjuvenile-onset mild HPP.At nearly 59, Judith began enzyme replacement therapy (Strensiq), which brought aboutpositive changes, including improved strength, energy, and quality of life. Despite thechallenges, Judith emphasizes the importance of early diagnosis and awareness within themedical community, which is a true testament to her determination.Thanks to patient support groups like Soft Bones, patients like Judith have access tosupport, medical networks, a close-knit community, and ongoing research into HPP. SoftBones provides access to valuable resources, connects patients with a network of otherswho understand their journey, and advocates for advancements in treatment, making a realdifference in the lives of those affected by HPP. You can read the full story here.13

A New Era in HPP Management: Introducing In 2023, we set out to create an all-encompassing health tracker application that would fit into ourpatients' lives. MyHPP app is an app developed by patients and physicians to transform patient careand inform hypophosphatasia research. It puts patients in charge of tracking their health while being avaluable partner in research for better HPP treatment and care.Soft Bones heavily invested in this app in 2023. We organized a series of focus groups to assist with deriving a solution. The group felt that a more accurate way to capture the impacts of HPP could lead to more productive discussions with their doctors and facilitate better care and management of their disease.When speaking with physicians, many said that having patients track their ongoing symptoms, including improvements or worsening, would be extremely helpful in providing better patient care and helping patients with insurance appeals.Users can easily track symptoms and manage their disease with a user-friendly interface. The myHPP app will also capture these entries to generate a discussion guide to facilitate a more meaningful dialogue with HPP providers.the myHPP app was launched in the latter half of 2024. You can find more info here.1615

A New Era in HPP Management: Introducing In 2023, we set out to create an all-encompassing health tracker application that would fit into ourpatients' lives. MyHPP app is an app developed by patients and physicians to transform patient careand inform hypophosphatasia research. It puts patients in charge of tracking their health while being avaluable partner in research for better HPP treatment and care.Soft Bones heavily invested in this app in 2023. We organized a series of focus groups to assist with deriving a solution. The group felt that a more accurate way to capture the impacts of HPP could lead to more productive discussions with their doctors and facilitate better care and management of their disease.When speaking with physicians, many said that having patients track their ongoing symptoms, including improvements or worsening, would be extremely helpful in providing better patient care and helping patients with insurance appeals.Users can easily track symptoms and manage their disease with a user-friendly interface. The myHPP app will also capture these entries to generate a discussion guide to facilitate a more meaningful dialogue with HPP providers.the myHPP app was launched in the latter half of 2024. You can find more info here.1615

18Maher Family Grant Winner 17Soft Bones is dedicated to advancing research andeducation for those affected by HPP. The 11th MaherFamily Grant was awarded to Claire Stenhouse, Ph.D., anassistant professor at the Huck Institutes for the LifeSciences at Pennsylvania State University. The grant willsupport Dr. Stenhouse's studies on sheep to understandthe mechanisms behind respiratory complications innewborns and infants severely affected by HPP.Read more here.Summary of the SecondInternational Scientific MeetingThe Second International Scientific Meeting was held,and a summary was published and made available onJBMR Plus®. Video recordings from the meeting areavailable for researchers and clinicians through HPPConnect. View the JBMR Plus article here. Soft Bones Presents at the OI Foundation ConferenceOn October 19-20, Deborah Fowler (President of Soft Bones) and Denise Goodbar(Executive Director) traveled to Arlington, VA, to participate in a meeting hosted by the OIFoundation. This gathering brought together healthcare leaders to discuss challenges facedby adult patients with rare diseases while navigating the healthcare system. The meetingevaluated how current care infrastructures and technologies address their unique needs.35 TravelGrants 1 ResearchGrant Over $25kawarded in grants

18Maher Family Grant Winner 17Soft Bones is dedicated to advancing research andeducation for those affected by HPP. The 11th MaherFamily Grant was awarded to Claire Stenhouse, Ph.D., anassistant professor at the Huck Institutes for the LifeSciences at Pennsylvania State University. The grant willsupport Dr. Stenhouse's studies on sheep to understandthe mechanisms behind respiratory complications innewborns and infants severely affected by HPP.Read more here.Summary of the SecondInternational Scientific MeetingThe Second International Scientific Meeting was held,and a summary was published and made available onJBMR Plus®. Video recordings from the meeting areavailable for researchers and clinicians through HPPConnect. View the JBMR Plus article here. Soft Bones Presents at the OI Foundation ConferenceOn October 19-20, Deborah Fowler (President of Soft Bones) and Denise Goodbar(Executive Director) traveled to Arlington, VA, to participate in a meeting hosted by the OIFoundation. This gathering brought together healthcare leaders to discuss challenges facedby adult patients with rare diseases while navigating the healthcare system. The meetingevaluated how current care infrastructures and technologies address their unique needs.35 TravelGrants 1 ResearchGrant Over $25kawarded in grants

Introducing Our Newest Team MembersMargaret Robb2019Margaret Robb is the Communications Manager and Patient/CaregiverNavigator at Soft Bones. She was drawn to our organization by the opportunity to continue advocating for patients and assisting them in navigating the healthcare system. Margaret brings unique experience from her time volunteering with the Jesuit Volunteer Corps. She lived with six housemates and worked at different non-profits throughout Cleveland during her tenure. She dedicated her efforts to supporting refugees and immigrants at a federally qualified healthcare center, helping to reduce barriers to care and promote resources and community events. This experience highlighted gaps in the healthcare system, which Margaret is now eager to address further, particularly for rare diseases like HPP. Her background in undergraduate studies fuels her passion for diving deeper into the scientific aspects of these conditions. She enjoys listening to people’s stories and understanding research that enhances care and treatment options. Margaret is excited to connect with the HPP community and contribute to the mission of Soft Bones.In November, Lucy George joined Soft Bones as the PatientEngagement Coordinator and Administrative Assistant. She ispassionate about talking to patients and assisting them in any waypossible. Lucy's role involves interacting with patients, providing them with educational materials, and aligning them with various program offerings. She feels grateful to be part of a team that supports HPP patients.Lucy is the youngest of six siblings. Growing up in a large family taught her valuable teamwork, patience, and effective communication skills, which have proven extremely valuable during her time at Soft Bones. These skills greatly benefit her work, as she demonstrates patience with the patients she interacts with and conveys her caring personality over the phone.Lucy is excited to be part of the Soft Bones team and is always ready to help. She is the friendlyvoice on the other end of the phone and is eagerto assist with any needs.Lucy GeorgeBuilding Our Future: and had 2internsWe added3 jobs

Introducing Our Newest Team MembersMargaret Robb2019Margaret Robb is the Communications Manager and Patient/CaregiverNavigator at Soft Bones. She was drawn to our organization by the opportunity to continue advocating for patients and assisting them in navigating the healthcare system. Margaret brings unique experience from her time volunteering with the Jesuit Volunteer Corps. She lived with six housemates and worked at different non-profits throughout Cleveland during her tenure. She dedicated her efforts to supporting refugees and immigrants at a federally qualified healthcare center, helping to reduce barriers to care and promote resources and community events. This experience highlighted gaps in the healthcare system, which Margaret is now eager to address further, particularly for rare diseases like HPP. Her background in undergraduate studies fuels her passion for diving deeper into the scientific aspects of these conditions. She enjoys listening to people’s stories and understanding research that enhances care and treatment options. Margaret is excited to connect with the HPP community and contribute to the mission of Soft Bones.In November, Lucy George joined Soft Bones as the PatientEngagement Coordinator and Administrative Assistant. She ispassionate about talking to patients and assisting them in any waypossible. Lucy's role involves interacting with patients, providing them with educational materials, and aligning them with various program offerings. She feels grateful to be part of a team that supports HPP patients.Lucy is the youngest of six siblings. Growing up in a large family taught her valuable teamwork, patience, and effective communication skills, which have proven extremely valuable during her time at Soft Bones. These skills greatly benefit her work, as she demonstrates patience with the patients she interacts with and conveys her caring personality over the phone.Lucy is excited to be part of the Soft Bones team and is always ready to help. She is the friendlyvoice on the other end of the phone and is eagerto assist with any needs.Lucy GeorgeBuilding Our Future: and had 2internsWe added3 jobs

Alex Lupo joined Soft Bones in 2023 as a JuniorGraphic Designer and has played a key role increating our annual report for two years.Alex has a passion for animals and enjoys takingphotos of local wildlife. During high school, he wasinterested in visual arts, and his passion for photography eventually led him in a different direction. Alex soon realized that graphic design was his true calling. Reflecting on this journey, it’s clear that the signs were always there; Alex was a visual learner and loved doodling. He dabbles in various art forms, including traditional sketches, digital art, and printmaking. Alex’s career at Soft Bones began during college. After applying to numerous design positions without success, his father suggested reaching out to Soft Bones, which led him to an internship. Now, Alex is a member of the Soft Bones team and is thrilled to be part of it. Having a job in the field so soon after college is fantastic, but playing a role in helping Soft Bones achieve its mission is truly special. Alex takes pride in knowing that his work helps educate people about HPP.Alex Lupo2221Driving Change: Soft Bones Golf Outing and 1st Annual GalaOn October 2nd, Soft Bones hosted its 15th Annual Golf Classic, drawing a record-setting112 golfers! This year's event was our largest fundraiser, generating essential funds for ourorganization. We deeply appreciate the dedicated golfers who consistently support ourmission year after year.Tournament Sponsor: Atlantic Health SystemBirdie Sponsor: The Fowler Family Charitable FoundationEagle Sponsors: Gates and Mary Ellen Hawn & Donnelly ConstructionDriving Range Sponsor: College Mind Counseling- Kristen TarantolaBeverage Station Sponsors: William F. Jones, DMD, and Ted WalshAdditional Tee Sponsors: Dan Burkhart, Berkshire Hathaway AZ - Harvey &Linda Salkow, The Pollock Firm LLC, FOMO Bar in Morristown, Vince Bisogno,Daniel McNeil, Richard Fowler Jr., Peter Dahms, McRae Capital Management,and M&M Perrotti's19th Hole Sponsors: Joseph Micale, DMD, and Francis Kenneally

Alex Lupo joined Soft Bones in 2023 as a JuniorGraphic Designer and has played a key role increating our annual report for two years.Alex has a passion for animals and enjoys takingphotos of local wildlife. During high school, he wasinterested in visual arts, and his passion for photography eventually led him in a different direction. Alex soon realized that graphic design was his true calling. Reflecting on this journey, it’s clear that the signs were always there; Alex was a visual learner and loved doodling. He dabbles in various art forms, including traditional sketches, digital art, and printmaking. Alex’s career at Soft Bones began during college. After applying to numerous design positions without success, his father suggested reaching out to Soft Bones, which led him to an internship. Now, Alex is a member of the Soft Bones team and is thrilled to be part of it. Having a job in the field so soon after college is fantastic, but playing a role in helping Soft Bones achieve its mission is truly special. Alex takes pride in knowing that his work helps educate people about HPP.Alex Lupo2221Driving Change: Soft Bones Golf Outing and 1st Annual GalaOn October 2nd, Soft Bones hosted its 15th Annual Golf Classic, drawing a record-setting112 golfers! This year's event was our largest fundraiser, generating essential funds for ourorganization. We deeply appreciate the dedicated golfers who consistently support ourmission year after year.Tournament Sponsor: Atlantic Health SystemBirdie Sponsor: The Fowler Family Charitable FoundationEagle Sponsors: Gates and Mary Ellen Hawn & Donnelly ConstructionDriving Range Sponsor: College Mind Counseling- Kristen TarantolaBeverage Station Sponsors: William F. Jones, DMD, and Ted WalshAdditional Tee Sponsors: Dan Burkhart, Berkshire Hathaway AZ - Harvey &Linda Salkow, The Pollock Firm LLC, FOMO Bar in Morristown, Vince Bisogno,Daniel McNeil, Richard Fowler Jr., Peter Dahms, McRae Capital Management,and M&M Perrotti's19th Hole Sponsors: Joseph Micale, DMD, and Francis Kenneally

SADDLE-UPGOLD SPONSOR2423Denim and Diamonds:Soft Bones hosted its first-ever Denim and Diamonds event on August 25th, welcoming over60 attendees. Guests enjoyed a lively evening with live music, delicious food, and theexcitement of bidding on auction items.RANCH HAND BRONZE SPONSORSTIP THEHAT SPONSOREQUITY WINE VENTURES LLC SALOON SPONSORSTRUT YOUR STUFF SPONSORGUNMETAL SILVER SPONSOR

SADDLE-UPGOLD SPONSOR2423Denim and Diamonds:Soft Bones hosted its first-ever Denim and Diamonds event on August 25th, welcoming over60 attendees. Guests enjoyed a lively evening with live music, delicious food, and theexcitement of bidding on auction items.RANCH HAND BRONZE SPONSORSTIP THEHAT SPONSOREQUITY WINE VENTURES LLC SALOON SPONSORSTRUT YOUR STUFF SPONSORGUNMETAL SILVER SPONSOR

2526HPP AND ME Zoom | Zoom Chat & Tutorial SessionsIn 2023, we launched the HPP AND ME Zoom Chat and Tutorialssessions. HPP AND ME is an online platform that providespatients with a safe and secure space to ask questions andengage with other HPP members. Hosted monthly, the HPP ANDME Zoom Chat offers an opportunity to connect virtually. Cindy R.leads the HPP AND ME Zoom Tutorials for our newest members,helping them navigate the platform and continue the conversation.Voice of the Patient Report In 2023, we published the official summary of the Externally-Led Patient-Focused DrugDevelopment Meeting (EL-PFDD) held in November 2022. This meeting was designed tocommunicate to the FDA the impacts of HPP on individuals' daily lives, the treatments thathave the most significant impact and benefits, and the perspectives of patients andcaregivers on the effectiveness of available therapies.This landmark report includes written statements and transcripts, summarized in the mainbody and fully provided in the appendices. It is dedicated to the courageous patients,caregivers, and families impacted by HPP. The Report can be read here.Rolling Out Our Patient of the Month SeriesIn 2023, we launched the Soft Bones Patient of the Month series to give more visibility topersonal stories. Each month, we highlight the journey of an adult or child with HPP. Thisinitiative raises the voices of our HPP members and fosters greater connections, as sharedexperiences help us feel less alone. It provides a platform for patients to shed light on theirdaily lives, challenges, victories, hopes for the future, and more. We featured our 12 Patientsof the Month during our Annual Appeal campaign. Read more about their journeys here. Enhancing Support: New Individual ResourcesPATIENT OF the month

2526HPP AND ME Zoom | Zoom Chat & Tutorial SessionsIn 2023, we launched the HPP AND ME Zoom Chat and Tutorialssessions. HPP AND ME is an online platform that providespatients with a safe and secure space to ask questions andengage with other HPP members. Hosted monthly, the HPP ANDME Zoom Chat offers an opportunity to connect virtually. Cindy R.leads the HPP AND ME Zoom Tutorials for our newest members,helping them navigate the platform and continue the conversation.Voice of the Patient Report In 2023, we published the official summary of the Externally-Led Patient-Focused DrugDevelopment Meeting (EL-PFDD) held in November 2022. This meeting was designed tocommunicate to the FDA the impacts of HPP on individuals' daily lives, the treatments thathave the most significant impact and benefits, and the perspectives of patients andcaregivers on the effectiveness of available therapies.This landmark report includes written statements and transcripts, summarized in the mainbody and fully provided in the appendices. It is dedicated to the courageous patients,caregivers, and families impacted by HPP. The Report can be read here.Rolling Out Our Patient of the Month SeriesIn 2023, we launched the Soft Bones Patient of the Month series to give more visibility topersonal stories. Each month, we highlight the journey of an adult or child with HPP. Thisinitiative raises the voices of our HPP members and fosters greater connections, as sharedexperiences help us feel less alone. It provides a platform for patients to shed light on theirdaily lives, challenges, victories, hopes for the future, and more. We featured our 12 Patientsof the Month during our Annual Appeal campaign. Read more about their journeys here. Enhancing Support: New Individual ResourcesPATIENT OF the month

2728HPP Network | Soft Bones started the year with strong momentum, building our HPP Network! Weconducted two additional meetings with our working group, focusing on enhancing HPPknowledge and fostering physician-peer connections to promote greater HPP education. Weare excited by the opportunity to launch several concrete initiatives resulting from the inputof our champions, including the working group and steering committee members. On the2024 horizon, Soft Bones is working to establish an HPP consensus statement or clinicalguidelines series, encourage greater information exchange between physicians and peers,and increase the usage and credibility of our extensive educational resources. These effortsreflect our commitment to strengthening the HPP community and improving education andcollaboration.Regional Round Ups In 2023, we hosted five regional meet-ups across five states (CA, IN, MA, MN and OH) andone virtual meet-up. Our dedicated Region Leads went above and beyond to createwelcoming spaces for patients to connect and share their HPP journeys. They were crucialin spearheading grassroots awareness, driving fundraising efforts, and bringing valuableresources to the local level. Second International Scientific Meeting |The Second International Scientific Meeting, held on June 2-4 in Bethesda, Maryland,brought together over 70 clinicians, physician-scientists, basic science researchers, andindustry representatives from four continents to advance the understanding and treatmentof hypophosphatasia (HPP). This diverse group shared their knowledge and experiences toimprove patient care and support families with HPP. The group discussed the latestadvances and ongoing research on this rare and complex metabolic disorder.The meeting included experts from various clinical disciplines, such as pediatrics, internalmedicine, genetics, dentistry, orthopedics, rehabilitation medicine, optometry, andrheumatology. Basic scientists, including enzymologists and bone biologists, alsoparticipated. Translational research focused on enzyme replacement, marrow celltransplantation, and genetic approaches for HPP.The meeting underscored the collaborative effort required to tackle HPP, which displays thebroadest range of severity among skeletal diseases. By bringing together such a wide rangeof expertise, the event highlighted the importance of interdisciplinary collaboration andcutting-edge research in advancing the care and treatment of patients with HPP. Specialthanks to the sponsors: Alexion AstraZeneca Rare Disease, AM Pharma, Charles River,PuREC, Rallybio, RampartBio, Be Biopharma, and 1cBio.Bethesda, MarylandVirtual

2728HPP Network | Soft Bones started the year with strong momentum, building our HPP Network! Weconducted two additional meetings with our working group, focusing on enhancing HPPknowledge and fostering physician-peer connections to promote greater HPP education. Weare excited by the opportunity to launch several concrete initiatives resulting from the inputof our champions, including the working group and steering committee members. On the2024 horizon, Soft Bones is working to establish an HPP consensus statement or clinicalguidelines series, encourage greater information exchange between physicians and peers,and increase the usage and credibility of our extensive educational resources. These effortsreflect our commitment to strengthening the HPP community and improving education andcollaboration.Regional Round Ups In 2023, we hosted five regional meet-ups across five states (CA, IN, MA, MN and OH) andone virtual meet-up. Our dedicated Region Leads went above and beyond to createwelcoming spaces for patients to connect and share their HPP journeys. They were crucialin spearheading grassroots awareness, driving fundraising efforts, and bringing valuableresources to the local level. Second International Scientific Meeting |The Second International Scientific Meeting, held on June 2-4 in Bethesda, Maryland,brought together over 70 clinicians, physician-scientists, basic science researchers, andindustry representatives from four continents to advance the understanding and treatmentof hypophosphatasia (HPP). This diverse group shared their knowledge and experiences toimprove patient care and support families with HPP. The group discussed the latestadvances and ongoing research on this rare and complex metabolic disorder.The meeting included experts from various clinical disciplines, such as pediatrics, internalmedicine, genetics, dentistry, orthopedics, rehabilitation medicine, optometry, andrheumatology. Basic scientists, including enzymologists and bone biologists, alsoparticipated. Translational research focused on enzyme replacement, marrow celltransplantation, and genetic approaches for HPP.The meeting underscored the collaborative effort required to tackle HPP, which displays thebroadest range of severity among skeletal diseases. By bringing together such a wide rangeof expertise, the event highlighted the importance of interdisciplinary collaboration andcutting-edge research in advancing the care and treatment of patients with HPP. Specialthanks to the sponsors: Alexion AstraZeneca Rare Disease, AM Pharma, Charles River,PuREC, Rallybio, RampartBio, Be Biopharma, and 1cBio.Bethesda, MarylandVirtual

3029The Hippo Squad consists of kids in our HPP community who receive fun-filled educationalactivity boxes in the mail every quarter. Each box is filled with HPP educational activitiesalong with a sprinkle of fun! Members will receive their boxes four times a year to getinvolved in engagement activities while developing important connections with peers.Mailings are available to U.S. residents only.This program is open to kids with HPP, their siblings, and children of parents with HPP.Each season, the Teen Advisory Council (TAC) creates fun and educational activities.In the spring box, kids explored expressing emotions through colors. They received rainbowcoloring sheets, colored pencils, and a pot of GOLD to symbolize that even after thestormiest weather, there's always a rainbow and a pot of gold at the end!The summer box focused on storytelling with puppets. It emphasized educating others aboutHPP. Kids received materials to create their puppets and a script to help them learn how totalk about HPP.For the fall box, members received musical instruments to make some noise for World HPPDay! It highlighted the power of community and how coming together can achieve incrediblethings.The winter box featured snowmen crafts, demonstrating how bone-building cells, orosteoblasts, resemble snowmen. It also included lessons on the dynamic and active rolebones play in supporting our bodies.122 families are enrolled in the program, with 194 children receiving the Hippo Squadmailings.Programs & Services14 Stick ItTo HPPmembers 194 HippoSquadmembers,122 FamiliesPodcast StatisticsViewed in fourdifferent countries:the U.S, the UK,Japan, and Belgium Over 60 downloadsfrom five differentepisodesThe top episodedownloaded was:Pain Management

3029The Hippo Squad consists of kids in our HPP community who receive fun-filled educationalactivity boxes in the mail every quarter. Each box is filled with HPP educational activitiesalong with a sprinkle of fun! Members will receive their boxes four times a year to getinvolved in engagement activities while developing important connections with peers.Mailings are available to U.S. residents only.This program is open to kids with HPP, their siblings, and children of parents with HPP.Each season, the Teen Advisory Council (TAC) creates fun and educational activities.In the spring box, kids explored expressing emotions through colors. They received rainbowcoloring sheets, colored pencils, and a pot of GOLD to symbolize that even after thestormiest weather, there's always a rainbow and a pot of gold at the end!The summer box focused on storytelling with puppets. It emphasized educating others aboutHPP. Kids received materials to create their puppets and a script to help them learn how totalk about HPP.For the fall box, members received musical instruments to make some noise for World HPPDay! It highlighted the power of community and how coming together can achieve incrediblethings.The winter box featured snowmen crafts, demonstrating how bone-building cells, orosteoblasts, resemble snowmen. It also included lessons on the dynamic and active rolebones play in supporting our bodies.122 families are enrolled in the program, with 194 children receiving the Hippo Squadmailings.Programs & Services14 Stick ItTo HPPmembers 194 HippoSquadmembers,122 FamiliesPodcast StatisticsViewed in fourdifferent countries:the U.S, the UK,Japan, and Belgium Over 60 downloadsfrom five differentepisodesThe top episodedownloaded was:Pain Management

3132Teen Advisory Program The Teen Advisory Council (TAC) is a support and advocacy group made up of teens whoeither have HPP, are siblings or children of someone with HPP, or are friends of someonewith HPP. Through monthly meetings, teens discuss ways to raise funds and awareness.This year, the TAC had 14 members. In May 2023, the TAC hosted its first-ever trivia nightto raise money for Soft Bones, with over 20 in attendance and raising $600. The TAC playsan important role in creating activities for the Hippo Squad and serving as mentors to theyounger HPP community.TAC Trivia NightThe Soft Bones Teen Advisory Council (TAC) hosted its first-ever Trivia Night on May 23rd.Friends, family, and members of the HPP community came together to test their knowledgeand compete for prizes. Although participation was free, the event raised nearly $600 indonations.Stick It To HPPThe Stick It To HPP program was created by our own Teen Advisory Council (TAC). Thegoals of the program are to help children gain independence on their self-injection journeyand create a safe space to do so. The self-injection starter kit comes with tips and funactivities. After each level, participants can snap a picture with their achievement trackerand see how far they have come. Mailings are available to U.S. residents only. In 2023, wehad 14 active Stick It To HPP members and one successful individual who completed theachievement tracker.

3132Teen Advisory Program The Teen Advisory Council (TAC) is a support and advocacy group made up of teens whoeither have HPP, are siblings or children of someone with HPP, or are friends of someonewith HPP. Through monthly meetings, teens discuss ways to raise funds and awareness.This year, the TAC had 14 members. In May 2023, the TAC hosted its first-ever trivia nightto raise money for Soft Bones, with over 20 in attendance and raising $600. The TAC playsan important role in creating activities for the Hippo Squad and serving as mentors to theyounger HPP community.TAC Trivia NightThe Soft Bones Teen Advisory Council (TAC) hosted its first-ever Trivia Night on May 23rd.Friends, family, and members of the HPP community came together to test their knowledgeand compete for prizes. Although participation was free, the event raised nearly $600 indonations.Stick It To HPPThe Stick It To HPP program was created by our own Teen Advisory Council (TAC). Thegoals of the program are to help children gain independence on their self-injection journeyand create a safe space to do so. The self-injection starter kit comes with tips and funactivities. After each level, participants can snap a picture with their achievement trackerand see how far they have come. Mailings are available to U.S. residents only. In 2023, wehad 14 active Stick It To HPP members and one successful individual who completed theachievement tracker.

Fundraising Efforts within the CommunityNew Jersey Devils Hockey Game Fundraiser On March 14th, Consortium Networks, Cribl, and Crowdstrike hosted a Soft Bones fundraiserat the New Jersey Devils game. They rented a suite and sold tickets to raffle off a NJ Devilsjersey signed by hockey star Jack Hughes. Attendees learned about HPP and were excited to support the HPP community. It was thrilling to see Soft Bones acknowledged on the Jumbotron! Thank you to everyone who donated and showed their support for HPP!3433Facebook and Instagram Fundraiser 2023 In 2023, six individuals created Facebook fundraising pages for Soft Bones. Despite our platform being downfor most of the year, we collectively raised $425. We deeply appreciate everyone who raised money for SoftBones, whether for birthdays, awareness days, end-of-year giving, or other occasions.

Fundraising Efforts within the CommunityNew Jersey Devils Hockey Game Fundraiser On March 14th, Consortium Networks, Cribl, and Crowdstrike hosted a Soft Bones fundraiserat the New Jersey Devils game. They rented a suite and sold tickets to raffle off a NJ Devilsjersey signed by hockey star Jack Hughes. Attendees learned about HPP and were excited to support the HPP community. It was thrilling to see Soft Bones acknowledged on the Jumbotron! Thank you to everyone who donated and showed their support for HPP!3433Facebook and Instagram Fundraiser 2023 In 2023, six individuals created Facebook fundraising pages for Soft Bones. Despite our platform being downfor most of the year, we collectively raised $425. We deeply appreciate everyone who raised money for SoftBones, whether for birthdays, awareness days, end-of-year giving, or other occasions.

3635The Spreadshop storeadded 5 new designs We sold 100 itemsOur Top 3 DesignsOur Most Popular ProductsKroger's Community Rewards programallows shoppers to select a nonprofitorganization to support. Kroger thendonates a portion of the shopper’spurchases to the chosen organization.In 2023, we raised $38.84.Shop online and contribute to SoftBones. Register for iGive – a uniqueonline shopping platform that allowsshoppers to donate a portion of theirpurchases to their favorite charities!$1,064Bonfire T-ShirtTo raise awareness on World HPP Day, we created a special design to commemorate this year’s 75th anniversary of the discovery of HPP by Canadianpediatrician Dr. John C.Rathbun. We sold 89 shirts! Lynch Creek WreathThis holiday season, we partnered with Lynch Creek Farmfor a wreath fundraiser where 15% of the proceeds went toSoft Bones. Lynch Creek Farm handcrafts traditional anddecorated Christmas wreaths, centerpieces, and otherholiday gifts. We raised $128.91Bundt Cake Fundraiser Cassandra Self, a Southwest Region Lead,hosted a local fundraiser in Texas withNothing Bundt Cakes in October to coincidewith World HPP Day. Thank you, Cassandra,for all your efforts!RaiseRight is our newest fundraiser. It is a platform where you can buy gift cards to over750+ brands, and a percentage of the proceeds goes to Soft Bones. Use our enrollmentcode LCHS1ABAFERN to join and support us through every gift card purchased!Round up your change for good! Walmart allows customers to round up purchases to thenearest dollar and donate the change to their charity of choice. Choose Soft Bones anddonate every time you shop ONLINE at Walmart.com.Soft Bones LogoHPP HippoCannonball Run, Roll or Stroll 5kWomen’s T-ShirtStickerUnisex CrewSweatshirt

3635The Spreadshop storeadded 5 new designs We sold 100 itemsOur Top 3 DesignsOur Most Popular ProductsKroger's Community Rewards programallows shoppers to select a nonprofitorganization to support. Kroger thendonates a portion of the shopper’spurchases to the chosen organization.In 2023, we raised $38.84.Shop online and contribute to SoftBones. Register for iGive – a uniqueonline shopping platform that allowsshoppers to donate a portion of theirpurchases to their favorite charities!$1,064Bonfire T-ShirtTo raise awareness on World HPP Day, we created a special design to commemorate this year’s 75th anniversary of the discovery of HPP by Canadianpediatrician Dr. John C.Rathbun. We sold 89 shirts! Lynch Creek WreathThis holiday season, we partnered with Lynch Creek Farmfor a wreath fundraiser where 15% of the proceeds went toSoft Bones. Lynch Creek Farm handcrafts traditional anddecorated Christmas wreaths, centerpieces, and otherholiday gifts. We raised $128.91Bundt Cake Fundraiser Cassandra Self, a Southwest Region Lead,hosted a local fundraiser in Texas withNothing Bundt Cakes in October to coincidewith World HPP Day. Thank you, Cassandra,for all your efforts!RaiseRight is our newest fundraiser. It is a platform where you can buy gift cards to over750+ brands, and a percentage of the proceeds goes to Soft Bones. Use our enrollmentcode LCHS1ABAFERN to join and support us through every gift card purchased!Round up your change for good! Walmart allows customers to round up purchases to thenearest dollar and donate the change to their charity of choice. Choose Soft Bones anddonate every time you shop ONLINE at Walmart.com.Soft Bones LogoHPP HippoCannonball Run, Roll or Stroll 5kWomen’s T-ShirtStickerUnisex CrewSweatshirt

Rob Moskow joined the Soft Bones Board with a wealth of expertise from his legal background and his consulting firm, Equity Wine Ventures. He assists clients in the wine industry with business strategy, counterfeit wine issues, and cellar management.Mr. Moskow began his legal career with the Nassau County District Attorney’s office. He has over twenty years of experience in corporate law, construction law, insurance defense litigation, and complex commercial litigation across several states, including New York and New Jersey. He is admitted to multiple federal and state courts, including the United States Supreme Court.In addition to his role on the Soft Bones Board, he serves as the Secretary of the HamiltonFarm Homeowners’ Association Board and is a member of its Architectural Subcommittee.He also coached baseball at Bernards Township Middle School and Ridge High School andwas formerly President of the Basking Ridge Little League Board of Directors.Mr. Moskow holds a degree in Finance from the University of Richmond and a Juris Doctorfrom St. John’s University. He lives in New Jersey with his wife, two children, and a GermanShepherd. He enjoys endurance racing, golf, travel, and wine collecting in his free time.3738Introducing Rob Moskow to the Soft Bones Board in 2023CoRDS International Contact RegistryDemonstrating Our Commitment to Data Security and PrivacyAt Soft Bones, we prioritize the security and privacy of sensitive information. Recognizing theimportance of safeguarding our community's data and the complexities of cybersecurity, we havetaken proactive measures to ensure that our data management practices meet the highest standards.We have engaged top-tier third-party experts to manage our databases and patient information for amore secure network. By partnering with companies for their expertise and strict security protocols,we can offer enhanced protection for all data. In addition to SSL encryptions, we’ve employed avariety of tools to increase security:Invision for HPP AND Me: Ensuring secure and user-friendly interactions.Security for our website: Providing comprehensive website security solutions.Google for email: Delivering reliable and secure email communication.Within3 for HPP Connect: Facilitating safe and confidential community engagement.Box.com for archiving materials: Offering secure and accessible storage solutions.Soft Bones's new app platform applies stringent privacy procedures and protocols, which was a keyfactor in our vendor selection process. Each of our partners has established policies to promptly alertstakeholders in the event of any data breaches, underscoring our collective commitment totransparency and accountability.While no organization can guarantee absolute security, we are dedicated to maintaining data safetyand privacy. By continuously investing in advanced security measures and collaborating with industryleaders, we strive to protect everyone affiliated with Soft Bones and maintain their trust in ourcommitment to their well-being.The CoRDS International HPP Contact Registry is an accessible database that informs everyregistered patient about research opportunities while safeguarding patient privacy. Soft Bones haspartnered with the non-profit Coordination of Rare Diseases at Sanford (CoRDS), allowing individualsto control their data. CoRDS is the largest free international rare disease registry for individualsdiagnosed with hypophosphatasia (HPP), carriers of HPP, undiagnosed, or those who suspect theymay have a rare metabolic disease. As of 2023, 405 individuals were registered.New Board of Trustees/StaffLegislative & Community ActionCollective Action for Change

Rob Moskow joined the Soft Bones Board with a wealth of expertise from his legal background and his consulting firm, Equity Wine Ventures. He assists clients in the wine industry with business strategy, counterfeit wine issues, and cellar management.Mr. Moskow began his legal career with the Nassau County District Attorney’s office. He has over twenty years of experience in corporate law, construction law, insurance defense litigation, and complex commercial litigation across several states, including New York and New Jersey. He is admitted to multiple federal and state courts, including the United States Supreme Court.In addition to his role on the Soft Bones Board, he serves as the Secretary of the HamiltonFarm Homeowners’ Association Board and is a member of its Architectural Subcommittee.He also coached baseball at Bernards Township Middle School and Ridge High School andwas formerly President of the Basking Ridge Little League Board of Directors.Mr. Moskow holds a degree in Finance from the University of Richmond and a Juris Doctorfrom St. John’s University. He lives in New Jersey with his wife, two children, and a GermanShepherd. He enjoys endurance racing, golf, travel, and wine collecting in his free time.3738Introducing Rob Moskow to the Soft Bones Board in 2023CoRDS International Contact RegistryDemonstrating Our Commitment to Data Security and PrivacyAt Soft Bones, we prioritize the security and privacy of sensitive information. Recognizing theimportance of safeguarding our community's data and the complexities of cybersecurity, we havetaken proactive measures to ensure that our data management practices meet the highest standards.We have engaged top-tier third-party experts to manage our databases and patient information for amore secure network. By partnering with companies for their expertise and strict security protocols,we can offer enhanced protection for all data. In addition to SSL encryptions, we’ve employed avariety of tools to increase security:Invision for HPP AND Me: Ensuring secure and user-friendly interactions.Security for our website: Providing comprehensive website security solutions.Google for email: Delivering reliable and secure email communication.Within3 for HPP Connect: Facilitating safe and confidential community engagement.Box.com for archiving materials: Offering secure and accessible storage solutions.Soft Bones's new app platform applies stringent privacy procedures and protocols, which was a keyfactor in our vendor selection process. Each of our partners has established policies to promptly alertstakeholders in the event of any data breaches, underscoring our collective commitment totransparency and accountability.While no organization can guarantee absolute security, we are dedicated to maintaining data safetyand privacy. By continuously investing in advanced security measures and collaborating with industryleaders, we strive to protect everyone affiliated with Soft Bones and maintain their trust in ourcommitment to their well-being.The CoRDS International HPP Contact Registry is an accessible database that informs everyregistered patient about research opportunities while safeguarding patient privacy. Soft Bones haspartnered with the non-profit Coordination of Rare Diseases at Sanford (CoRDS), allowing individualsto control their data. CoRDS is the largest free international rare disease registry for individualsdiagnosed with hypophosphatasia (HPP), carriers of HPP, undiagnosed, or those who suspect theymay have a rare metabolic disease. As of 2023, 405 individuals were registered.New Board of Trustees/StaffLegislative & Community ActionCollective Action for Change

IMAGEIMAGETribute to Our Advocates: Their Legacy in HPP Advancements3940In MemoriamOn May 19, 2023, Gerald Brandt, the founder of Soft Bones in Germany, passed away. Hewas an outspoken advocate for the hypophosphatasia community and the founder of HPPDeutschland eV, one of the first HPP patient advocacy groups ever created. He was vital inthe formation of Soft Bones.As an accomplished writer in both English and German, Gerald shared his lifelong stories ofliving with the disease. He learned to walk late, described himself as not very resilient as achild, endured early tooth loss, and developed strong knock knees. After several operationsand numerous fractures during childhood and into adulthood, he then endured jointproblems and pronounced kidney dysfunction. According to his statements, he stoppedcounting the number of broken bones.In 2006, he founded HPP Deutschland eV to unite the HPP community in Germany, hostingannual patient meetings, advocating with policymakers for HPP recognition, and spendingcountless hours on the phone with patients and families, supporting, educating, andconnecting them with appropriate care teams. He was also a sought-after speaker andpublished author, hypothesizing that King Tutankhamun had hypophosphatasia Many of us will remember Gerald as a lifeline in times of need. He supported patients andfamilies from around the world, answering questions and continually raising awareness ofHPP. He is greatly missed by all of us at Soft Bones, and the impact of his work willcontinue for years to come. As the German HPP group shared, "You can close your eyesand wish for him to come back, or you can open them and see what he left behind."Gerald BrandtDr. Phillipe Crine On June 13, 2023, Dr. Philippe Crine, a pioneering researcher in developing asfotase alfa,passed away. He was swept away by pancreatic cancer within two months. He diedpeacefully at home, surrounded by his loved ones.Dr. Crine was a Professor of Biochemistry at the Université de Montréal and foundedEnobia Pharma in Montreal in 1997. Enobia Pharma was a biotechnology start-upspecializing in bone-related orphan diseases. The company developed a bone-targetedenzyme replacement therapy for hypophosphatasia, a rare and often fatal inheritedmetabolic bone disease, for which there was no approved therapy at the time.Philippe will be remembered as the man who, along with a team of dedicated andpassionate researchers, gave a new lease on life to children born with hypophosphatasia.The innovative therapy he helped develop allowed children with the disease to survive andlead normal lives. Forever humble, he considered himself and his team privileged to havemade such a significant difference in the lives of many children and families.Steven Bernstein With deep sadness, we announce the passing of Steven Bernstein in 2023, one of SoftBones' most dedicated volunteers from Rockaway, NJ. Steven supported Soft Bones invarious capacities for the past five years, including our annual golf outing. His wife, Jean,was also actively involved.Steven will be remembered for his unwavering dedication and contributions to ourcommunity. He will be missed immensely. Our thoughts and prayers are with his familyduring this difficult time. We are grateful to have known him and had the privilege of workingwith him all these years.

IMAGEIMAGETribute to Our Advocates: Their Legacy in HPP Advancements3940In MemoriamOn May 19, 2023, Gerald Brandt, the founder of Soft Bones in Germany, passed away. Hewas an outspoken advocate for the hypophosphatasia community and the founder of HPPDeutschland eV, one of the first HPP patient advocacy groups ever created. He was vital inthe formation of Soft Bones.As an accomplished writer in both English and German, Gerald shared his lifelong stories ofliving with the disease. He learned to walk late, described himself as not very resilient as achild, endured early tooth loss, and developed strong knock knees. After several operationsand numerous fractures during childhood and into adulthood, he then endured jointproblems and pronounced kidney dysfunction. According to his statements, he stoppedcounting the number of broken bones.In 2006, he founded HPP Deutschland eV to unite the HPP community in Germany, hostingannual patient meetings, advocating with policymakers for HPP recognition, and spendingcountless hours on the phone with patients and families, supporting, educating, andconnecting them with appropriate care teams. He was also a sought-after speaker andpublished author, hypothesizing that King Tutankhamun had hypophosphatasia Many of us will remember Gerald as a lifeline in times of need. He supported patients andfamilies from around the world, answering questions and continually raising awareness ofHPP. He is greatly missed by all of us at Soft Bones, and the impact of his work willcontinue for years to come. As the German HPP group shared, "You can close your eyesand wish for him to come back, or you can open them and see what he left behind."Gerald BrandtDr. Phillipe Crine On June 13, 2023, Dr. Philippe Crine, a pioneering researcher in developing asfotase alfa,passed away. He was swept away by pancreatic cancer within two months. He diedpeacefully at home, surrounded by his loved ones.Dr. Crine was a Professor of Biochemistry at the Université de Montréal and foundedEnobia Pharma in Montreal in 1997. Enobia Pharma was a biotechnology start-upspecializing in bone-related orphan diseases. The company developed a bone-targetedenzyme replacement therapy for hypophosphatasia, a rare and often fatal inheritedmetabolic bone disease, for which there was no approved therapy at the time.Philippe will be remembered as the man who, along with a team of dedicated andpassionate researchers, gave a new lease on life to children born with hypophosphatasia.The innovative therapy he helped develop allowed children with the disease to survive andlead normal lives. Forever humble, he considered himself and his team privileged to havemade such a significant difference in the lives of many children and families.Steven Bernstein With deep sadness, we announce the passing of Steven Bernstein in 2023, one of SoftBones' most dedicated volunteers from Rockaway, NJ. Steven supported Soft Bones invarious capacities for the past five years, including our annual golf outing. His wife, Jean,was also actively involved.Steven will be remembered for his unwavering dedication and contributions to ourcommunity. He will be missed immensely. Our thoughts and prayers are with his familyduring this difficult time. We are grateful to have known him and had the privilege of workingwith him all these years.

Events4241FinancialsWorld HPP Day is our chance as a community to spreadawareness for this rare bone disease and bring everyone together.From patients living with HPP, to caregivers, families, loved ones,researchers and doctors, we want everyone to get involved! Learnhow you can participate here. ExpensesIncomeSupport Education/Awareness 43%Research 39%General/Administrative 9%Fundraising 9%Grants/Sponsorships 49.5%Donations 25.7%Golf Outing 15.8%Events/Fundraisers 5%Other 4%3rd Annual Cannonball 5K Run, Roll, or Stroll September 29, 2024 - October 31, 2024Join us as we come together as an HPP community to raise globalawareness of hypophosphatasia. Register now for the 3rd AnnualCannonball 5K. Complete a 5K in a single day or pace yourself overthe course of the month or choose to support an active participant.World HPP Day Zoom Open House & Costume ContestOctober 30, 2024Join Cindy R. and Sue K. on October 30th from 8:30 PM - 10:30PM Eastern for a spooktacular night of chats, costumes, andcamaraderie!“Together We Can” is a call to action that showcases the collectivepower of our community. TOGETHER WE CAN is a statement initself. But also, it begs an answer – what can we do together?Submit a photo of yourself with this sign filled out to be featured onour social media platform! World HPP Day Contest AlertOctober 1, 2024 - October 30, 2024Leading up to World HPP Day, we challenge you to download themyHPP app and track your symptoms. Every day you track, youcan be entered for a chance to win a World HPP Day sweatshirt.Click here for full details.

Events4241FinancialsWorld HPP Day is our chance as a community to spreadawareness for this rare bone disease and bring everyone together.From patients living with HPP, to caregivers, families, loved ones,researchers and doctors, we want everyone to get involved! Learnhow you can participate here. ExpensesIncomeSupport Education/Awareness 43%Research 39%General/Administrative 9%Fundraising 9%Grants/Sponsorships 49.5%Donations 25.7%Golf Outing 15.8%Events/Fundraisers 5%Other 4%3rd Annual Cannonball 5K Run, Roll, or Stroll September 29, 2024 - October 31, 2024Join us as we come together as an HPP community to raise globalawareness of hypophosphatasia. Register now for the 3rd AnnualCannonball 5K. Complete a 5K in a single day or pace yourself overthe course of the month or choose to support an active participant.World HPP Day Zoom Open House & Costume ContestOctober 30, 2024Join Cindy R. and Sue K. on October 30th from 8:30 PM - 10:30PM Eastern for a spooktacular night of chats, costumes, andcamaraderie!“Together We Can” is a call to action that showcases the collectivepower of our community. TOGETHER WE CAN is a statement initself. But also, it begs an answer – what can we do together?Submit a photo of yourself with this sign filled out to be featured onour social media platform! World HPP Day Contest AlertOctober 1, 2024 - October 30, 2024Leading up to World HPP Day, we challenge you to download themyHPP app and track your symptoms. Every day you track, youcan be entered for a chance to win a World HPP Day sweatshirt.Click here for full details.

4344Board of DirectorsDeborah Nettune FowlerPresident and FounderKaren CarolonzaVice PresidentMichelle LaBruno, CPATreasurerHeidi FloydSecretaryAdam Grenker, Esq.AttorneyRob Moskow, Esq. AttorneyScott NettuneBoard MemberBrenda Ziegler, DOBoard MemberScientific Advisory BoardMichael Whyte, MD, ChairShriners Hospitals For Children Thomas Carpenter, MDYale School of Medicine Kathryn McCrystal Dahir, MDVanderbilt University Medical CenterMatthew Drake, MD, PhDMayo ClinicGary Gottesman, MDWashington UniversitySchool of MedicineJosé Luis Millan, PhD Sanford Children’s HealthResearch CenterLothar Seefried, MDUniversity of Würzburg, GermanyJill Simmons, MD, DDSVanderbilt University Medical CenterPeter Tebben, MDMayo ClinicTimothy Wright, MS, DDSUniversity of North Carolina Chapel Hill,School of DentistryRegion LeadsChris Denune, NortheastJudith Harris, NortheastBlynda Kellner, Southeast Scott Galvin, SoutheastCindy Reasor, Midwest I Nicole Belting, Midwest ISharon Talkington, Midwest IINichole Macknight, Midwest IISusan Brown, CentralLindsey Willson, Central Nellie Sanders, CentralKara Schweiss, CentralCasey Anne Johnson, CentralCami Rush, South CentralCassandra Self, South CentralAmy Britt, SouthwestSue Krug, SouthwestAnn Haak, NorthwestHaley Thornton, NorthwestStaffDeborah Nettune FowlerPresident and FounderDenise GoodbarVice PresidentMargaret RobbCommunications Manager &Patient/Caregiver NavigatorLucy George,Patient/CaregiverEngagement Coordinator &Administrative AssistantAlex LupoJunior Graphic DesignerSue KrugPatient LiaisonCindy ReasorProject Coordinator

4344Board of DirectorsDeborah Nettune FowlerPresident and FounderKaren CarolonzaVice PresidentMichelle LaBruno, CPATreasurerHeidi FloydSecretaryAdam Grenker, Esq.AttorneyRob Moskow, Esq. AttorneyScott NettuneBoard MemberBrenda Ziegler, DOBoard MemberScientific Advisory BoardMichael Whyte, MD, ChairShriners Hospitals For Children Thomas Carpenter, MDYale School of Medicine Kathryn McCrystal Dahir, MDVanderbilt University Medical CenterMatthew Drake, MD, PhDMayo ClinicGary Gottesman, MDWashington UniversitySchool of MedicineJosé Luis Millan, PhD Sanford Children’s HealthResearch CenterLothar Seefried, MDUniversity of Würzburg, GermanyJill Simmons, MD, DDSVanderbilt University Medical CenterPeter Tebben, MDMayo ClinicTimothy Wright, MS, DDSUniversity of North Carolina Chapel Hill,School of DentistryRegion LeadsChris Denune, NortheastJudith Harris, NortheastBlynda Kellner, Southeast Scott Galvin, SoutheastCindy Reasor, Midwest I Nicole Belting, Midwest ISharon Talkington, Midwest IINichole Macknight, Midwest IISusan Brown, CentralLindsey Willson, Central Nellie Sanders, CentralKara Schweiss, CentralCasey Anne Johnson, CentralCami Rush, South CentralCassandra Self, South CentralAmy Britt, SouthwestSue Krug, SouthwestAnn Haak, NorthwestHaley Thornton, NorthwestStaffDeborah Nettune FowlerPresident and FounderDenise GoodbarVice PresidentMargaret RobbCommunications Manager &Patient/Caregiver NavigatorLucy George,Patient/CaregiverEngagement Coordinator &Administrative AssistantAlex LupoJunior Graphic DesignerSue KrugPatient LiaisonCindy ReasorProject Coordinator

List of Donors: Soft Bones Thanks YouCannonball 5k RunToby BatesKelly BrasolMaryanne CarusoMaggie ChoLisa CottrellSuzanne DriscollAmanda EleyJuley EmbryLiam FMaria FalkenhagenNykhe FariesBarbara FilarJason FowlerDeborah FowlerRobert GarrDenise GoodbarBill GoodbarChloe GoodbarPhil GorhamElizabeth GriceAnn HaakMatthew HannerAddy HannerKristen HannerSarah HansenJudith HarrisMatt HayCatherine HudakTanvir JoshiLiz KearneyKishan MistryMristen MitchellTommy PilatskyCindy ReasorSigrid SikesClark SittigRoyer SmithAria SpicerKayla SpicerAmy WeinbergerSharon Wolfe15th AnnualGolf ClassicTournament Sponsor: Atlantic HealthSystemEagle Sponsors: Gates and Mary EllenBeverage Station Sponsors: WilliamJones and Ted WalshAdditional Tee Sponsors: Dan Burkart, Dr.Christina Carter, Elizabeth Ketterson, andLinda Salkow19th Hole Sponsors: Miller and ElizabethBugliari, Francis Keneally and JosephMicaleAdditionalGolf DonorsMatt AdeyGordon J AhaltKen BanasiakBrian BechanJack BurkeChristina CarterLeighAnne CastimoreCda Ventures LLCLinda ChangBrian D' AnnaPeter DahmsColin DevlinCathy FenlonRichard FowlerJohn and Judith HarrisScott HildenbrandJames KavanaughSamrat KhichiHenry and Theresa KimKurt LanceMichael LeavyRalph LoveysMadison Ave Oral &Maxillofacial SurgeryAssociates, LLCDenim &DiamondsHelen ApplebyAngie BechanAnna BechanAngie BechanKaren and Stephen CarolonzaMatt CastimoreAlfred ChangLinda ChangChrisholmNuala ClohesyEmilee ColalucciBrian ColalucciGianna D'AlessioTara DavisPatrick DavisChris DenuneJim FarrellKarin FarrellPatient of theMonth DonationsAT&TBeth ByszewskiJulia CharlesJoanne KingScott KomorowskiCarol LovasSarah PolitowskiMary YoungBrian MaherDan McNeilMcRae Capital ManagementJudo MeighanAlex MitchellTodd MoonRob MoskowJoseph Oakes, IVAnthony OrlandoWilliam RaincsukKeith RichardsonJennie RinaldiLuis RosadoDrew RosenfeldLinda SalkowJohn ScallyAndrew and Anne StockJoseph TatoTed WalshGary WhiteJack WindolfAnn Marie WisniewskiCathy FenlonSean FenlonDeirdre FenlonBrian FenlonJennifer FlanaganMike FlanaganNicholas FowlerKim FoxDana GilbertDenise GoodbarGreen RoomHatfield Schwartz Law GroupLLCKristin HuamaniKelly KettersonJackson KettersonStephanie KozeMichael LeavyIrene LeavyRay LynchDeb McGarityTod McGarityRob Moskow Equity WineClaire MulhearnGreg MulhearnGloria RabunRobby Rethick IIIJoanne Riina- DenuneLuise RisarioDan SalzarBoutique Calia SardellaAmy SoleMichael StruederAmy WeinbergerKeating WeinbergerMeaghan WisniewskiSarah WisniewskiAnn Marie WisniewskiAnnualAppealAnonymous donorBecky and Ken Breedon andFamilyCommunity Foundation of NewJerseyRichard DerrickMary DilioneNapierala DobrowaSean DunneKathy EdwardsRegina GoldbergGreen Room CommunicationsAdam GrenkerNan HatchJ.M. Rodgers Co., Inc.Sandra JensenRose JohnsonHilary KeeverMary Sue Laurel-GarwoodJane LawPatricia MasonJeannie George Jr. MeeksChuck MillerAaron PerryLorraine RichmondPatricia and Joel Romano WolfSuzanne Driscoll and Royer SmithJames, Tamyra and WesRuzickaDonna J ShirleyFarris SittigGreg StooksburyThe Benevity CommunityImpact Fund - Matching GiftAbbott LabsPerry TroisiMargaret VernetAmy WalkerMegan WillsonJohn Timothy WrightBarbara J YoungDonors GeneralAdvance Land and TimberMary Frances and Keith AlsupNan BatemanChurch of Christ at South ForkJames and Catherine CookMary DonohoeChristine DouglasKathy EdwardsJames and Lou Ann ElamJames and Laura ElkinsJulie EmbryLisa GallowitzPatricia HobbsSandra JensenRose JohnsonHilary KeeverDana KinlawJeffery and Lesa Joyce KirkmanJane LawJean LevitanNancy MarinoBetty and James MichaelNorth Central CT Chamber ofCommerceColby PellegrinoWilliam RiedPaul SalernoArchie and Mollie ShawRichard and Beth StegallMary StevensJulia UrwinByron VielehrErrett VielehrAmy WalkerBarbara J YoungDonors inHonor/MemoriumAdvance Land and TimberMary Frances and Keith AlsupNan BatemanChurch of Christ at South ForkJames and Catherine CookMary DonohoeChristine DouglasKathy EdwardsJames and Lou Ann ElamJames and Laura ElkinsJulie EmbryLisa GallowitzPatricia HobbsSandra JensenRose JohnsonHilary KeeverDana KinlawJeffery and Lesa Joyce KirkmanJane LawJean LevitanNancy MarinoBetty and James MichaelNorth Central CT Chamber ofCommerceColby PellegrinoWilliam RiedPaul SalernoArchie and Mollie ShawRichard and Beth StegallMary StevensJulia UrwinByron VielehrErrett VielehrAmy WalkerBarbara J Young

List of Donors: Soft Bones Thanks YouCannonball 5k RunToby BatesKelly BrasolMaryanne CarusoMaggie ChoLisa CottrellSuzanne DriscollAmanda EleyJuley EmbryLiam FMaria FalkenhagenNykhe FariesBarbara FilarJason FowlerDeborah FowlerRobert GarrDenise GoodbarBill GoodbarChloe GoodbarPhil GorhamElizabeth GriceAnn HaakMatthew HannerAddy HannerKristen HannerSarah HansenJudith HarrisMatt HayCatherine HudakTanvir JoshiLiz KearneyKishan MistryMristen MitchellTommy PilatskyCindy ReasorSigrid SikesClark SittigRoyer SmithAria SpicerKayla SpicerAmy WeinbergerSharon Wolfe15th AnnualGolf ClassicTournament Sponsor: Atlantic HealthSystemEagle Sponsors: Gates and Mary EllenBeverage Station Sponsors: WilliamJones and Ted WalshAdditional Tee Sponsors: Dan Burkart, Dr.Christina Carter, Elizabeth Ketterson, andLinda Salkow19th Hole Sponsors: Miller and ElizabethBugliari, Francis Keneally and JosephMicaleAdditionalGolf DonorsMatt AdeyGordon J AhaltKen BanasiakBrian BechanJack BurkeChristina CarterLeighAnne CastimoreCda Ventures LLCLinda ChangBrian D' AnnaPeter DahmsColin DevlinCathy FenlonRichard FowlerJohn and Judith HarrisScott HildenbrandJames KavanaughSamrat KhichiHenry and Theresa KimKurt LanceMichael LeavyRalph LoveysMadison Ave Oral &Maxillofacial SurgeryAssociates, LLCDenim &DiamondsHelen ApplebyAngie BechanAnna BechanAngie BechanKaren and Stephen CarolonzaMatt CastimoreAlfred ChangLinda ChangChrisholmNuala ClohesyEmilee ColalucciBrian ColalucciGianna D'AlessioTara DavisPatrick DavisChris DenuneJim FarrellKarin FarrellPatient of theMonth DonationsAT&TBeth ByszewskiJulia CharlesJoanne KingScott KomorowskiCarol LovasSarah PolitowskiMary YoungBrian MaherDan McNeilMcRae Capital ManagementJudo MeighanAlex MitchellTodd MoonRob MoskowJoseph Oakes, IVAnthony OrlandoWilliam RaincsukKeith RichardsonJennie RinaldiLuis RosadoDrew RosenfeldLinda SalkowJohn ScallyAndrew and Anne StockJoseph TatoTed WalshGary WhiteJack WindolfAnn Marie WisniewskiCathy FenlonSean FenlonDeirdre FenlonBrian FenlonJennifer FlanaganMike FlanaganNicholas FowlerKim FoxDana GilbertDenise GoodbarGreen RoomHatfield Schwartz Law GroupLLCKristin HuamaniKelly KettersonJackson KettersonStephanie KozeMichael LeavyIrene LeavyRay LynchDeb McGarityTod McGarityRob Moskow Equity WineClaire MulhearnGreg MulhearnGloria RabunRobby Rethick IIIJoanne Riina- DenuneLuise RisarioDan SalzarBoutique Calia SardellaAmy SoleMichael StruederAmy WeinbergerKeating WeinbergerMeaghan WisniewskiSarah WisniewskiAnn Marie WisniewskiAnnualAppealAnonymous donorBecky and Ken Breedon andFamilyCommunity Foundation of NewJerseyRichard DerrickMary DilioneNapierala DobrowaSean DunneKathy EdwardsRegina GoldbergGreen Room CommunicationsAdam GrenkerNan HatchJ.M. Rodgers Co., Inc.Sandra JensenRose JohnsonHilary KeeverMary Sue Laurel-GarwoodJane LawPatricia MasonJeannie George Jr. MeeksChuck MillerAaron PerryLorraine RichmondPatricia and Joel Romano WolfSuzanne Driscoll and Royer SmithJames, Tamyra and WesRuzickaDonna J ShirleyFarris SittigGreg StooksburyThe Benevity CommunityImpact Fund - Matching GiftAbbott LabsPerry TroisiMargaret VernetAmy WalkerMegan WillsonJohn Timothy WrightBarbara J YoungDonors GeneralAdvance Land and TimberMary Frances and Keith AlsupNan BatemanChurch of Christ at South ForkJames and Catherine CookMary DonohoeChristine DouglasKathy EdwardsJames and Lou Ann ElamJames and Laura ElkinsJulie EmbryLisa GallowitzPatricia HobbsSandra JensenRose JohnsonHilary KeeverDana KinlawJeffery and Lesa Joyce KirkmanJane LawJean LevitanNancy MarinoBetty and James MichaelNorth Central CT Chamber ofCommerceColby PellegrinoWilliam RiedPaul SalernoArchie and Mollie ShawRichard and Beth StegallMary StevensJulia UrwinByron VielehrErrett VielehrAmy WalkerBarbara J YoungDonors inHonor/MemoriumAdvance Land and TimberMary Frances and Keith AlsupNan BatemanChurch of Christ at South ForkJames and Catherine CookMary DonohoeChristine DouglasKathy EdwardsJames and Lou Ann ElamJames and Laura ElkinsJulie EmbryLisa GallowitzPatricia HobbsSandra JensenRose JohnsonHilary KeeverDana KinlawJeffery and Lesa Joyce KirkmanJane LawJean LevitanNancy MarinoBetty and James MichaelNorth Central CT Chamber ofCommerceColby PellegrinoWilliam RiedPaul SalernoArchie and Mollie ShawRichard and Beth StegallMary StevensJulia UrwinByron VielehrErrett VielehrAmy WalkerBarbara J Young