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

Congratulations to TEAM RAWF at the NYC Half! Despite chilly temps, rain, wind, and plenty of hills, Cecilia and Ross from Rhythm Pharmaceuticals, and David (caregiver) powered through the course and crossed the finish line strong! A special shoutout to David, who finished with an impressive 1:39:55 time! Beyond the race, our team made an incredible impact—raising nearly $8,000 to support our mission at the Raymond A. Wood Foundation. We are so grateful to our runners, donors, and supporters who made this possible. Your dedication fuels our work and brings hope to the patient community.

New Research Collaboration: Studying Fatigue in Craniopharyngioma Survivors The Raymond A. Wood Foundation is excited to announce a new research collaboration with Rhythm Pharmaceuticals to study the impact of fatigue in craniopharyngioma survivors. Fatigue is one of the most persistent and least understood symptoms affecting individuals with hypothalamic-pituitary brain tumors. Through this registry study, we aim to gather critical patient-reported data to deepen our understanding of how fatigue affects daily life, its relationship with weight gain and daytime sleepiness, and potential areas for future interventions. By working directly with the patient community, caregivers, and research partners, we are driving forward the science needed to improve care and treatment options for survivors. ?? Learn more about the study: https://lnkd.in/gK2vTPfu ?? Join the study: https://lnkd.in/gidq3BBz ?? Questions? Email us at [email protected]

This weekend, we’re cheering on four incredible runners who are going the distance for the Raymond A. Wood Foundation! ?? David, Ross, and Cecilia are hitting the streets of NYC for the NYC Half Marathon, and Leigha, a craniopharyngioma survivor, is running a half marathon in her hometown! Each of them is running not just for the challenge, but to raise critical funds to support survivors and families impacted by hypothalamic-pituitary brain tumors. ???? Let’s show them our support! Help them reach their fundraising goals: ?? Support David, Ross, and Cecilia: https://lnkd.in/evkfgaxG ?? Support Leigha: https://lnkd.in/eSeNTPVi Every step they take makes a difference—let’s cheer them on and help them cross the finish line strong! ????

Save the Date! The Pituitary Brain Tumor Family Conference is happening November 15-16, 2024, in Philadelphia! Join us for a weekend dedicated to education, connection, and empowerment for patients, caregivers, and families affected by hypothalamic-pituitary brain tumors. Topics include: ? Latest treatment approaches & research ? Managing endocrine issues ? Navigating clinical care ? Emergency response & stress dosing ? School, IEPs, & social skills ? Adult endocrine care & long-term survivorship This is an opportunity to hear from leading experts, connect with other families, and gain valuable insights to help navigate the complex journey of care. ?? Mark your calendars and stay tuned for more details!

A big shoutout to Othman Ouenes, Founder & CEO of Fidari and a dedicated RAWF Board Member, who is running in the NYC Half Marathon on March 16 as part of Team RAWF! ?? Othman is lacing up his running shoes to support our mission and make a difference for the patient community. Let’s rally behind him as he takes on this challenge! If you're in NYC, join our cheering section in Times Square and help us show Othman and the whole team some love! ???? Drop a ?? in the comments to send your support!

Exciting News! We are thrilled to announce the promotion of Jamie Ping to Director of Programs and Development! Jamie joined the Raymond A. Wood Foundation in April 2022 as our Outreach Coordinator, quickly making an impact with her dedication and passion for serving the patient community. In 2023, she stepped into the role of Outreach and Communications Manager, expanding our reach and strengthening connections within the craniopharyngioma community. Now, as Director of Programs and Development, Jamie will lead efforts to enhance and expand our programs, foster partnerships, and drive the foundation’s growth to better support survivors and families. Please join us in congratulating Jamie on this well-deserved promotion! We are so grateful for her commitment to our mission and excited for what’s ahead. ??

The Raymond A. Wood Foundation proudly supports Obesity Care Week as we advocate for greater awareness, access to care, and compassionate treatment for individuals affected by obesity. For brain tumor survivors, obesity is not simply a matter of lifestyle or epigenetics but often a complex medical condition resulting from hypothalamic syndrome (also known as hypothalamic obesity). Hypothalamic syndrome is a serious and often misunderstood consequence of tumors affecting the hypothalamus, the brain’s control center for metabolism, hunger, and energy regulation. Survivors of craniopharyngioma, germinoma, and other hypothalamic-pituitary tumors may face an uphill battle against rapid, uncontrollable weight gain that is resistant to traditional diet and exercise interventions. This condition significantly impacts physical health, mental well-being, and overall quality of life, yet few healthcare providers and insurance policies recognize the need for specialized treatment options. During Obesity Care Week, we stand in solidarity with brain tumor survivors and all individuals struggling with obesity caused by medical conditions. We call for increased research, better access to evidence-based treatments, and a shift in how obesity is understood and addressed in healthcare. No one should have to fight this battle alone, and no one should be denied the care they deserve. Sign the pledge: www.obesitycareweek.org

Let’s give a huge shoutout to Ross Martin, Head of Patient Advocacy & Government Affairs at Rhythm Pharmaceuticals, as he takes on the NYC Half Marathon on March 16 as part of Team RAWF! Ross isn’t just running—he’s racing to make a difference for our patient community. If you're in NYC, come be part of our cheering squad on Race Day at Times Square and help us show Ross and the whole team some love! Drop a ?? in the comments to cheer him on, and let us know if you’ll be there! ??

Rare Disease Week: Shining a Light on Arginine Vasopressin Deficiency (AVP-D) and Adipsia Arginine Vasopressin Deficiency (AVP-D), formerly known as central diabetes insipidus, is a rare, life-threatening condition caused by damage to the hypothalamus or pituitary gland, disrupting the body's ability to regulate water balance. When adipsia (the inability to feel thirst) is also present, the risk becomes even greater, as patients may not recognize life-threatening dehydration. Why is AVP-D with Adipsia So Dangerous? ?? AVP-D alone causes: ?? Excessive thirst (polydipsia) and constant dehydration ?? Frequent, large-volume urination (polyuria), even at night ?? Electrolyte imbalances, leading to confusion, fatigue, and organ damage ?? Life-threatening dehydration crisis without proper medication and access to water ?? When Adipsia is also present: ?? Patients don’t feel thirst, making hydration entirely dependent on scheduled drinking ?? Dehydration can occur without warning, leading to dangerous sodium imbalances ?? Strict fluid & medication management is required to prevent crisis Why Awareness Matters AVP-D with Adipsia is rare and often misunderstood, leading to misdiagnosis, medical neglect, and life-threatening emergencies if not properly managed. Many medical professionals are unaware of the condition, which can delay treatment in critical situations. More education, research, and awareness are needed to protect patients. This Rare Disease Week, let’s raise awareness for AVP-D and Adipsia, advocate for better medical education, and push for continued research to improve treatment and emergency care. Visit our website for more information on this condition: https://zurl.co/6MnBO

Rare Disease Week: Shining a Light on Hypothalamic Obesity Acquired Hypothalamic Obesity (HO) is a rare and devastating condition caused by damage to the hypothalamus, the brain’s control center for metabolism, hunger, and energy balance. It often occurs after brain tumors, surgery, or trauma, leaving patients with uncontrollable weight gain that does not respond to diet or exercise. ?? What Makes HO Different? Unlike typical obesity, HO is driven by brain dysfunction, not lifestyle choices. The damaged hypothalamus disrupts normal hunger and energy regulation, leading to: Rapid, excessive weight gain that is nearly impossible to control ?? Reduced metabolism, making weight loss extremely difficult ?? Constant, intense hunger (hyperphagia) despite adequate food intake ?? Insulin resistance & increased risk of serious health complications ?? Why Awareness Matters: Patients with HO face stigma, misdiagnosis, and a lack of effective treatments. More research is needed to develop therapies that address the underlying brain dysfunction. This Rare Disease Week, let’s amplify awareness of HO and advocate for better research, treatment options, and support for those living with this challenging condition. Join our patient registry or visit our website for more information on this condition and potential treatments: https://zurl.co/jywhs