Raymond A. Wood Foundation | Support for Hypothalamic Pituitary Brain Tumor Survivors and Caregivers

Exciting News! Our Board Chair’s Artwork Selected for Rare Artist Exhibition—Let’s Help Her Get to Capitol Hill! We’re thrilled to announce that Eugenie, our incredible Board Chair, is one of the 20 finalists (from a pool of 228 artists) in the Rare Artist contest with her powerful oil painting, The Art of Surviving Craniopharyngioma. Eugenie’s piece represents her passion for advocating for survivors, inspired by Alex and the craniopharyngioma community she’s championed for over four years with us at the Raymond A. Wood Foundation. From November 11–22, there’s a public voting period where the top ten artists will earn the chance to speak during Rare Disease Week on Capitol Hill, February 2025, sharing their messages directly with legislators. For Eugenie, this is a dream opportunity to bring awareness to craniopharyngioma, a tumor with the most severe quality-of-life impact among non-malignant pediatric brain tumors. Often mischaracterized as “benign,” craniopharyngioma is overlooked by the research community, leaving survivors without critical research funding. Help Eugenie share this vital message with lawmakers and advocate for the support survivors need to thrive. We’ll remind you closer to voting time (November 11–22), and we’re so grateful for your support in this journey. Let’s come together to help her raise awareness and make a difference! https://zurl.co/CZRe

Exciting news! The Raymond A. Wood Foundation is a charity partner for the 2025 NYC Half Marathon. Join us for this unforgettable experience of running through the streets of NYC while supporting our mission to improve the quality of life for brain tumor survivors. These spots are already going fast—don’t miss your chance to be a part of something truly impactful! Want to join us? Email us at development@rawoodfoundation.org to get your spot.

Last week, the Raymond A. Wood Foundation had the privilege of attending the Chan Zuckerberg Initiative (CZI) Science in Society meeting in San Jose, CA. Representing the foundation were Executive Director Amy Wood and Scientific Advisor Dr. Nathalie Kayadjanian. The meeting underscored the critical importance of data collection through patient registries and emerging platforms, as well as the exciting potential of AI in rare disease diagnosis. Attendees were also moved by the sharing of personal stories from the rare disease community, reinforcing the urgency of their work. This year marks the foundation's final year of CZI funding as part of the Rare As One Network, but they remain deeply connected to this collaborative effort to drive research and find treatments. Being selected as a CZI grantee has been a transformative experience for the foundation, significantly advancing patient-centered craniopharyngioma research and treatment development. The Raymond A. Wood Foundation is eager to continue this important work, pushing forward in the fight for treatments and cures.

The Medication Burden of Craniopharyngioma Surviviors Managing health challenges for craniopharyngioma survivors often means taking multiple medications daily. According to our recent survey of 82 participants: 📊 94% are taking thyroid replacement (T4) 📊 85% are on corticosteroid replacement 📊 79% take anti-diuretic hormone replacement 📊 63% are on growth hormone replacement 📊 60% take vitamin supplements 📊 59% are on sex hormone replacement On average, survivors manage 7 medications daily, with some taking as many as 15 to maintain their health. This highlights the complexity of their needs and the importance of comprehensive, coordinated care to support their journey. Read more about data insights from the Hypothalamic-Pituitary Brain Tumors Patient Registry https://zurl.co/jGmf or participate in the registry to help advance research https://zurl.co/xGuc

RAWF executive director Amy Wood was honored to attend the Children's Brain Tumor Network (CBTN) Summit at the Amazon Web Services (AWS) Headquarters in Crystal City this week. She had the opportunity to connect with other patient advocates, including the Lilabean Foundation, and engage in important conversations about advancing research and care for brain tumor survivors. AI and machine learning are transforming scientific research and patient care, marking a pivotal moment in innovation. CBTN’s network of brilliant minds is pioneering collaborative strategies that accelerate discovery and explore groundbreaking advancements in healthcare and scientific discovery. This summit highlighted the power of collaboration and the future of care for survivors. The Raymond A. Wood Foundation is proud to be a member of the CBTN Executive Council and support this groundbreaking work.

🌟 Did you miss our latest newsletter? 🌟 No worries! We sent out some exciting updates last week, but you can still catch up on all the latest news about our work, progress, and upcoming events by visiting our website. 💻 Want to stay in the loop? Sign up to get our newsletter delivered straight to your inbox so you never miss a beat! 📧 Check it out here and sign up for future updates: https://zurl.co/rEkV

New data from our Hypothalamic-Pituitary Brain Tumor Patient Registry highlights the challenges of diagnosing Hypothalamic Obesity (HO): 👉 50% of survivors reported being diagnosed with HO 👉 Only 35% received a formal, written diagnosis, while 79% received a verbal diagnosis This gap in documentation can impact the quality of care and support for patients. Read more about the latest data: https://zurl.co/6uSp Help us improve understanding and treatment by joining the registry! https://lnkd.in/eSHRJQVK

Top Current Health Challenges for Craniopharyngioma (CP) Survivors Our latest registry data highlights the top health challenges reported by CP survivors, and the results speaks to the daily struggles faced by our community: Hypothyroidism: 86.1% Growth hormone deficiency: 78.7% Central diabetes insipidus: 76.9% Fatigue: 75.0% Central adrenal insufficiency: 75.0% Sex hormone deficiency: 72.2% Obesity: 61.1% Abnormal temperature regulation: 60.2% Excessive daytime sleepiness: 58.3% Weight gain: 56.5% Cognitive deficits: 55.6% These insights are invaluable for advancing research and improving care for survivors. Find out more about the Hypothalamic-Pituitary Brain Tumors Patient Registry https://lnkd.in/gPQ4cBH9 Read about the latest data: https://lnkd.in/gzPcX4Ah

Celebrating Resilience: Maria Jesus' Journey This Hispanic Heritage Month, we honor the incredible journey of Maria Jesus, a 20-year-old third-year medical student from Cartagena de Indias, Colombia. Diagnosed with Craniopharyngioma last October, Maria Jesus has shown extraordinary strength in the face of adversity. Despite the challenges of hydrocephalus and the uncertainty surrounding her upcoming surgery, Maria Jesus remains focused on her studies and dreams of becoming a neurosurgeon. With the support of her dedicated mother and friends, she is exploring alternative treatment options, including an Omaya reservoir, as they navigate the complexities of her care. Maria Jesus is not just a survivor; she is an inspiration to many. Her scholarship and academic excellence reflect her unwavering determination to overcome the obstacles in her path. As she continues her education, we pray for her health and future success. Let's celebrate Maria Jesus and all the resilient young minds who inspire us with their courage and tenacity.

We are excited to announce that Dr. Scott L. Coven has joined our Board of Directors! As an Associate Professor of Clinical Pediatrics in Pediatric Neuro-Oncology at Indiana University School of Medicine, Scott brings a wealth of knowledge and experience to our team. His dedication to cancer survivorship, public health, and promoting health equity aligns perfectly with our mission. We look forward to the valuable insights and leadership he will bring as we continue to support our community and advocate for survivors. Welcome, Scott!