Raymond A. Wood Foundation Newsletter:
Inspiring Hope – Fall 2024 Edition |
Thanks to your incredible support, we're excited to share our latest updates. Your generosity helps drive our ongoing research, outreach efforts, and upcoming events, making a lasting impact on our community. Together, we continue to create meaningful change. | Happy Birthday Raymond Alexander Wood! |
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Today marks another trip around the sun for Alex, and this trip has been full of ups and downs. Earlier this month, Alex was hospitalized for septic shock. He had been struggling health-wise over the summer, with a diagnosis of pneumonia in early August that was lingering. Add into the mix a bout of strep throat, and his system went into a meltdown. But in true Alex form, he pulled through and was home in a few days, back to his routine. Shawn and I are still catching our breath.
We always just expect that he will pull through these circumstances, but the reality is that we never know. Kids that survive these tumors face numerous health challenges because the part of the brain that manages all of the other body systems has been impacted. On paper, craniopharyngioma has a high survival rate, but this past year, we have seen so much loss of these fighters from ongoing issues brought on by the tumors or their treatments.
We continue to strive to find better treatments for these tumors and to improve ongoing care for these patients – for Alex and all who face these battles. Every victory Alex has is a reminder of the hope and resilience these children embody, but it’s also a reminder of how fragile their health can be. This year, we’ve lost too many from our community, children whose lives ended far too soon due to complications from this relentless disease.
Your support is not just a lifeline for patients like Alex, but a force that can lead to the breakthroughs we so desperately need. Together, we can help these children and their families hold on to hope, live better lives, and ensure their futures. Thank you for being part of our mission. With deep gratitude,
Amy Wood |
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Your Support Creates Opportunities to Advance Research
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Hypothalamic-Pituitary Brain Tumors Patient Registry
With your support, the Hypothalamic-Pituitary Brain Tumor Patient Registry, launched in May, and is becoming a vital resource for the global community. This interactive, participant-driven platform connects individuals diagnosed with rare hypothalamic-pituitary brain tumors, like craniopharyngioma, while driving crucial research to advance the data collection needed to develop new diagnostic and treatment options, giving hope to those affected.
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Vital Insights and Hope for Brain Tumor Survivors
The Raymond A. Wood Foundation is uncovering vital data about the significant health challenges craniopharyngioma (CP) survivors face. Our patient registry reveals that the majority of CP survivors struggle with conditions like hypothyroidism (86%), growth hormone deficiency (79%), and central diabetes insipidus (77%). In addition, 50% of survivors report being diagnosed with hypothalamic obesity, a difficult condition that significantly impacts their daily lives. Many survivors manage an average of seven medications daily, with some taking up to 15. This data underscores the urgent need for improved treatments and comprehensive care, and with your continued help, we can drive meaningful change for this community.
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Meet Peter - Our latest Handheld Blood Analyzer Recipient |
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Peter, a courageous 9-year-old, is now able to better manage his arginine vasopressin deficiency (AVP-D) with a handheld blood analyzer provided by the Raymond A. Wood Foundation. Diagnosed with a brain tumor in late 2023, Peter has faced many challenges, including managing AVP-D, which requires constant monitoring of blood sodium levels. This device allows Peter’s family to quickly and easily track his condition, giving them greater independence and reducing hospital visits. Peter’s inspiring resilience and joyful spirit, combined with the power of community support, highlight the life-changing impact you make possible for survivors like him. Thank you for helping us provide critical resources to those who need them most.
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Supporting Brain Tumor Survivors and Caregivers Every Step of the Way!
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At the Raymond A. Wood Foundation, we are committed to empowering brain tumor survivors and their families through a range of supportive programs. Our Newly Diagnosed Mentorship Program pairs newly diagnosed patients and families with experienced mentors who offer valuable guidance and firsthand knowledge to help navigate the difficult journey ahead. For ongoing connection and encouragement, we offer Survivor and Caregiver Support Groups, providing safe spaces for both survivors and caregivers to share their stories, seek advice, and find strength in community. We also have exciting news for younger members of our community—the upcoming Teen Support Group will offer teens a space to connect with peers facing similar challenges. These programs ensure that no one faces the challenges of brain tumors alone.
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Welcoming Dr. Scott Coven and Othman Oneness to the Board of Directors |
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We are thrilled to welcome two exceptional new members to the Raymond A. Wood Foundation board: Othman Ouenes and Dr. Scott Coven!
Othman, the CEO and Co-Founder of Fidari, is transforming patient engagement and care coordination through AI and personalized care plans. With extensive experience in life sciences and a proven track record in building partnerships that enhance patient care, Othman’s leadership in fundraising has significantly advanced Fidari’s research initiatives, including collaborations with leading cancer centers. His focus on patient-reported outcomes and compliance aligns perfectly with our mission to improve the quality of life for survivors of craniopharyngioma and hypothalamic-pituitary brain tumors.
Dr. Coven, an Associate Professor of Clinical Pediatrics in Pediatric Neuro-Oncology at Indiana University School of Medicine, is deeply committed to cancer survivorship and public health. His research emphasizes promoting health equity and addressing disparities in care that impact clinical outcomes.
We are excited to have both Othman and Dr. Coven on our board and look forward to the innovative ideas and expertise they will bring to our mission of supporting brain tumor survivors and their families. |
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Celebrate with Us: Your Support Shines at the DC Dancing Stars Gala! |
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We are excited to announce our participation in the upcoming DC Dancing Stars Gala, an extraordinary event that combines the joy of dance with the power of community support. This year, the Raymond A. Wood Foundation is proud to showcase our talented dancers, Marcia Davis and Dan Gradishar, who are dedicated to raising awareness and funds for brain tumor survivors.
Each dancer brings their unique passion and creativity to the floor, embodying the spirit of resilience and hope that our foundation stands for. Join us for an evening of inspiring performances and heartfelt connections as we come together to support a worthy cause and celebrate the incredible strength of our community. Your support makes a difference in the lives of those we serve, and we can’t wait to share this special night with you!
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| Meet Josh Begley, who is taking on his first triathlon this November!
Josh, a professional chef in South Carolina, is training for his first triathlon and will be competing in honor of his brother, Matt, a brave survivor of craniopharyngioma, while raising funds for the Raymond A. Wood Foundation. We invited our community to cheer Josh on. Find out more and support Josh!
Feeling inspired? You too can make a difference! Consider starting your own fundraising event in support of the Raymond A. Wood Foundation. Every effort helps us get closer to improving the lives of brain tumor survivors. Find out how you can help. |
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Your support provides hope to brain tumor survivors, caregivers, and families |
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