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TURNING pain into POWER

THE MIP FOUNDATION

OUR MISSIONThe MIP Foundation’s mission is to foster and promote mental health support and social services for Adolescent and Young Adult (AYA) oncology patients, while increasing awareness about the eects of pediatric cancer. The MIP Foundation strives to:• Empower AYA patients to learn to voice to their fears, concerns, and anxieties about cancer. We provide mental wellness tools, unique to their own needs, to equip and empower AYA’s to learn new ways to cope with stress, anxiety, and physical changes created by cancer. We encourage self-advocacy skills by nding their voice to become a part of their treatment plan.• Connect peers facing cancer with one another to foster a sense of community and decrease feelings of isolation. Helping reconnect with and recall who they were before their diagnosis will remind them that cancer does not dene who they are. • Encourage an understanding that coping strategies help create more control of how they respond to having cancer, essentially helping to both feel mentally and physically more in charge of their life.MISSION1

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OVERVIEWAYA CHALLENGES WHY ARE THE NEEDS OF ADOLESCENTS AND YOUNG ADULTS UNIQUE?When an AYA is diagnosed with cancer, the immediate course of action is to begin ghting using medicine and proven protocols that have a history of curing cancer and restoring good health. However, there is more to beating cancer than just medicine. And yet mental health support is not an automatic part of a treatment plan. Teens and young adults are navigating a unique and very important developmental stage. They are exploring individuality and identity, discovering support systems, and encountering life milestones that are a challenge for all young people. Cancer disrupts this already complicated landscape, throwing these many dicult aspects and experiences of cancer treatment into the mix. It is important for an AYA to assemble a strong “tool box” of skills to help process and cope with the continued challenges of a cancer diagnosis. To nd an age-appropriate role in their cancer treatment and develop a voice that is heard by their support people and medical team, will create long lasting benets beyond their cancer diagnosis.Although each AYA’s cancer experience is personal and dierent, we want to give insight into why enhancing skills to process while encouraging coping, is necessary. On the following page, you will see thoughts that challenge our MIPs with every new day and every new encounter. We hope that you can begin to appreciate and understand the unique experience of being an AYA with cancer. Supporting them in their pursuit to amplify their voice and strengthen their resilience is critical to moving on from cancer and living with the uncertainty it brings. How, when you are only 14 years old, can you possibly be able to deal with the lifelong issue of infertility, knowing you would fall in love and have to share this aspect of yourself? This was a real part of our son’s life, knowing someday he would have to tell the person he fell in love with that he could not have children.Melissa Delaney-Doliner, mother to Colin Delaney3

4ISOLATIONTHEFUTUREPHYSICALEFFECTSCANCERPSYCHOLOGICALDISTRESSPHYSICAL EFFECTS: An AYA is expected to deal with challenging physical eects; to confront “grown up” issues; and to make decisions without the benet of life experiences to lean on. The physical eects of treatment are signicant and for many patients include: pain, nausea, fatigue, full body hair loss, hearing loss, changes in cognitive abilities, weight loss, weight gain, growth delays or stunted growth, scarring, loss of limbs, infertiity, bladder and bowel incontinence and more…PSYCHOLOGICAL DISTRESS: The experience of cancer treatment has signicant emotional and social consequences for AYAs including increased anxiety, depression, post traumatic stress, and concerns about mortality. Additionally, AYAs are treated in pediatric hospitals surrounded by younger children where they may feel out of place. The experience of cancer for an AYA interrupts the course of emerging adulthood.ISOLATION: Diagnosed with cancer at an age when they are supposed to be gaining independence and discovering who they are, AYA cancer patients instead nd themselves stripped of freedom and autonomy. There are rarely days o from cancer. THE FUTURE: Cancer is a lifelong diagnosis for an AYA. With advances in treatment, many AYA are surviving and able to move forward in their lives, yet are twice as likely to suer chronic health and psychological conditions. Depression, anxiety, PTSD, permanent physical changes, infertility, and cognitive decline are life long concerns. “I feel like a burden to my family. Everyone’s life has changed because of me.”I can’t relate to my friends any more. I am worried about dying and they are worried about what to do Friday night.”“I feel so guilty. My mom had to stop working. Can we aord this?” “My face is swollen and my skin is discolored from the chemo. I don’t want anyone to see me! I can’t even bear to look at myself.”“I can’t seem to remember anything anymore, my brain isn’t working right!”“I have no energy to do anything at all!”“I am falling so behind in school, will I even be able to graduate?”“Am I going to die? Will I relapse in the future? Or get another cancer?”“How can I fall in love with someone and plan a life together knowing I have to tell them I’m infertile. ”“It’s easier to be alone than to be around people and see how they look at me.”“My friends are all going out and I have to stay home.”“Annual check-ups with special tests for the rest of my life? What if I nd a job that doesn’t have good insurance?”THE MIP FOUNDATION

OVERVIEW5ISOLATIONTHEFUTUREPHYSICALEFFECTSCANCERPSYCHOLOGICALDISTRESSPHYSICAL EFFECTS: An AYA is expected to deal with challenging physical eects; to confront “grown up” issues; and to make decisions without the benet of life experiences to lean on. The physical eects of treatment are signicant and for many patients include: pain, nausea, fatigue, full body hair loss, hearing loss, changes in cognitive abilities, weight loss, weight gain, growth delays or stunted growth, scarring, loss of limbs, infertiity, bladder and bowel incontinence and more…PSYCHOLOGICAL DISTRESS: The experience of cancer treatment has signicant emotional and social consequences for AYAs including increased anxiety, depression, post traumatic stress, and concerns about mortality. Additionally, AYAs are treated in pediatric hospitals surrounded by younger children where they may feel out of place. The experience of cancer for an AYA interrupts the course of emerging adulthood.ISOLATION: Diagnosed with cancer at an age when they are supposed to be gaining independence and discovering who they are, AYA cancer patients instead nd themselves stripped of freedom and autonomy. There are rarely days o from cancer. THE FUTURE: Cancer is a lifelong diagnosis for an AYA. With advances in treatment, many AYA are surviving and able to move forward in their lives, yet are twice as likely to suer chronic health and psychological conditions. Depression, anxiety, PTSD, permanent physical changes, infertility, and cognitive decline are life long concerns. “I feel like a burden to my family. Everyone’s life has changed because of me.”I can’t relate to my friends any more. I am worried about dying and they are worried about what to do Friday night.”“I feel so guilty. My mom had to stop working. Can we aord this?” “My face is swollen and my skin is discolored from the chemo. I don’t want anyone to see me! I can’t even bear to look at myself.”“I can’t seem to remember anything anymore, my brain isn’t working right!”“I have no energy to do anything at all!”“I am falling so behind in school, will I even be able to graduate?”“Am I going to die? Will I relapse in the future? Or get another cancer?”“How can I fall in love with someone and plan a life together knowing I have to tell them I’m infertile. ”“It’s easier to be alone than to be around people and see how they look at me.”“My friends are all going out and I have to stay home.”“Annual check-ups with special tests for the rest of my life? What if I nd a job that doesn’t have good insurance?”

In 2021, we entered the second year of the pandemic still facing uncertainty and barriers to being able to provide programming. Our hospital partners were still limiting physical donations of goods, a portion of the patient’s care team was still working primarily remotely and in person face to face care was still navigating its new normal. In person activities were still canceled and everyone was pivoting to discover how to provide eective programming in a virtual setting. Programming needsplummeted. So what did The MIP Foundation do? We took a lesson from our MIP families struggling with a cancer diagnosis and we began to look for the silver lining in things. When cancer enters the family dynamic through their teen’s diagnosis, the entire family unit is immediately thrust into a new world and challenged to nd a new way of thinking. There are challenges and barriers to navigate. Yet, within those challenges are moments of the ercest love, uninching strength, and clarity as to what is most important.The MIP Foundation found the silver lining in the pandemic and found those same moments allowing us to learn more about ourselves as an organization. We grew more connected to the families we are supporting and found the unexpected opportunity to develop programming more deeply through virtual platforms, while evaluating the direction that we are moving in. The pandemic allowed us to build a more solid base of programming, eectively reaching more AYA’s then we had expected to by our third year of operating. 6PROGRAMMINGTURNING PAIN INTO POWERI think she felt really seen and validated by the gifts in the kit. She made a really wonderful observation when we met yesterday when she said that she loved the (MIP) kit because it didn’t feel like gifts asking her to celebrate having cancer, but felt like tools; care; and support to help her feel stronger and more prepared for what it’s actually like to have cancer.Oncology Psychology Resident, Nemours Children’s HospitalTHE MIP FOUNDATION

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As our agship program, MIP Kits unfailingly continue to empower the nominated AYA. Each MIP Kit is essentially a coping skills toolbox, weaving the patient’s personal interests together with the skills they would like to learn more about. Gaining skills to cope with depression, boredom, anxiety, fear, pain, loss of autonomy, and isolation are paramount to an AYA navigating a cancer diagnosis. MIP Kits empower an AYA to learn to voice their fears, concerns, and anxieties. Kits are a collection of curated mental health items that take into consideration the patient’s specic needs and cancer diagnosis. Literally, not one MIP Kit is the same. They shouldn’t be; everyone’s cancer journey and mental health needs are unique and their MIP kit should be too. The MIP Kit includes items to alleviate stress and anxiety, focus the mind, encourage mental and physical wellness, and most importantly, expose an AYA to new coping skills to turn pain into power.MIP Kits empower the nominating social worker to engage more deeply in knowing their patients and what interests them outside of the cancer world, in turn, learning about how the patient wants to engage in and learn new coping skills. This empowers both the social worker and patient to discuss identiable wellness goals. Most importantly the patient has the opportunity to be reminded that cancer is just one part of who they are. MAIN PROGRAMMING MIP KITS 9What touched my heart the most (in my MIP Kit) was the letter that came with it, written specically for me... it said, “You may have cancer, but cancer doesn’t have you.” The letter went on to tell me that I am the Most Important Person in my treatment plan. Now each patient I see while receiving my treatments I consider the Most Important Person in their plan.” Cecily Lovas, MIP, https://www.theodysseyonline.com/mip-foundationPROGRAMMING

10MORE PROGRAMMINGEMPOWER, CONNECT, ENCOURAGESelf-care Kits We know that with cancer, moments of positivity and self-love are hard to nd on certain days. AYA’s are being asked to manage many changes, both to their physical appearance and how they physically feel. Frustration and negative feelings are a normal part of a cancer diagnosis. It can be hard to accept changes in energy level or appearance.Self-care Kits serve a dual purpose. They act as a tool for a psychosocial team member to engage in a dicult conversation many teens are reluctant to have but very much need: the importance of meeting their body where it is in treatment. Additionally, this resource reinforces the practice of self-care, empowering an AYA to feel more in control by paying attention to what they need to feel better. Self-care is an AYA turning their pain into power. Inpatient Power Up Packs Being diagnosed with cancer puts an AYA into a completely new, unfamiliar world, made even harder when admitted to the hospital and isolated from familiar surroundings, family, and friends. This can be uncomfortable, stressful, or even frightening at times.Often AYAs have not had the life experience to understand that coping with something dicult, like a cancer diagnosis or hospital admission, is much easier when you ask for and accept help. Developing a support system is an important part of positively managing their mental wellness. MIP Power Up Packs are a bag full of fun items that a psychosocial team member can share with a struggling teen, creating space for a conversion on the importance of building a support system and accepting help. THE MIP FOUNDATIONMIP Mental Health DaysHow many times do you say to yourself, “I want a break” knowing that you are feeling overwhelmed, and you need to take time o to regroup and reset? An AYA during treatment may not feel like they can ask for time o. The MIP Mental Health Day program oers an AYA the opportunity to take a day o to connect with family or friends, encouraging them to remember that cancer is just one small part of who they are. Connecting and recharging empowers a teen to step back into treatment with renewed energy. Child Life Specialist Engagement Tools Being an AYA in a pediatric hospital can feel out of place, especially when toys and activity rooms are geared towards younger children. Throughout the year, The MIP Foundation donates hundreds of “teen toys” to the oncology child life teams. Managing isolation, loneliness, and boredom with something fun such as a Lego set, art supplies, journals, activity books, and creative projects are great ways for an AYA to relax, take a brain break from thinking about cancer, and lower their stress. It also creates another opportunity for a child life specialist to engage each AYA in conversation about their wellbeing. Peer Connections Finding a peer group that “gets it’’ is important to mental health and wellness. Many patients report feeling a disconnect from their friends and classmates. The MIP Foundation encourages peer connections by providing supplies for AYA groups which are then facilitated by a Child Life Specialist while they are admitted to the hospital. Additionally, we host Zoom AYA Trivia, connecting oncology peers with one another in a fun way across multiple hospital partners. These activities occur monthly with the goal decreasing feelings of isolation and loneliness.

11PROGRAMMINGThank you again for the opportunity to be a part of MIP. It made me feel a little less alone in a time where i have felt most alone. I have learned so much and I am truly grateful I got to be a part of such a wonderful foundation. I want to help show how I turned my pain into power :) I want to share my story and how MIP has made a dierence inmyjourney.A MIP, Nemours Children’sHospital

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MELISSA DOLINEREXECUTIVE DIRECTOR AND BOARD PRESIDENTProgramming Chair, Social Media ChairDIANE SMITHBOARD VICE PRESIDENT & TREASURERFinance Chair, Fund Development Co-ChairKIM MORRISSECRETARYFund Development Co-ChairTODD CURRYBOARD MEMBERExecutive Committee, Finance Committee, Fund Development CommitteeMARIE HORCHLERBOARD MEMBERExecutive Committee, Marketing Chair, Programming CommitteeELIZABETH SPELLMAN, MSW, LCSWBOARD MEMBERProgramming CommitteeRANA ADAMSBOARD MEMBERFund Development Committee, Marketing CommitteeKELLY CLEGG, RN, BSN, CPHONBOARD MEMBERProgramming CommitteeSHANNON FERGUSONBOARD MEMBERMarketing Committee, Programming CommitteeANDREA PERELMAN, PSYDBOARD MEMBERProgramming CommitteeSHARLYN PRICEBOARD MEMBERFund Development Committee, Programming CommiteeThe TeamBOARD OFDIRECTORSBOARD13

P.O. Box 326Oreland, PA 19075Emailinfothemipfoundation@gmail.comWebsitewww.themipfoundation.orgTHE MIP FOUNDATION