Raymond A. Wood Foundation

Raymond A. Wood Foundation Our mission is to drive research and advocate for treatment outcomes to improve quality of life for hypothalamic-pituitary brain tumor survivors.

The diagnosis of a brain tumor is life-changing and treatment can cause multiple life long side affects — many of which are rare and difficult to manage. From the purchase of a lifesaving medical device to developing and producing tools to help daily management of care easier; the foundation aims help survivors thrive through creating connections to innovation and information that can improve life after survival.

Barbecues and food-centered gatherings can be challenging for people living with hypothalamic obesity — and for caregive...
06/13/2026

Barbecues and food-centered gatherings can be challenging for people living with hypothalamic obesity — and for caregivers supporting children with aHO. Check out the latest post on our blog for a few gentle, practical tips to help you navigate the day https://zurl.co/XT0we

The EveryLife Foundation for Rare Diseases EveryLife Foundation for Rare Diseases is excited to invite families to appl...
06/12/2026

The EveryLife Foundation for Rare Diseases EveryLife Foundation for Rare Diseases is excited to invite families to apply for travel stipends to attend Rare Family Day 2026 on October 3. Hosted by Ultragenyx at its campus in the San Francisco Bay area, this special event brings rare families together from across the country for a day of connection, celebration, and fun.

Rare Family Day features activities, food, advocate speakers, a Rare Artist display, and more, creating a fun and welcoming environment for families to connect and celebrate together.

Apply for a travel stiped before June 26th! https://zurl.co/1OEfc

06/11/2026

"Effective treatments are tremendously enabled when you’ve got a strong partnership between a patient organization and a company trying to develop a therapy.” — Dr. David Meeker, CEO of Rhythm Pharmaceuticals

At the Raymond A. Wood Foundation, we believe patient advocacy organizations play a critical role in advancing research, awareness, and treatment access for rare diseases like acquired hypothalamic obesity.

This conversation with Dr. David Meeker highlights something our community should know: patient voices matter in drug development.

Through community education, patient registries, research collaboration, and advocacy, RAWF helped bring visibility to an often overlooked condition impacting survivors of hypothalamic-pituitary brain tumors. Partnerships between patients, advocacy organizations, clinicians, and industry are essential to ensuring treatments are not only developed — but reach the people who need them most.

We are proud to stand alongside patients and families while working collaboratively to improve recognition, access, and quality of life for this community.

The full conversation on the future of aHO treatment with Dr. Meeker is streaming now on Uscreen. Visit https://zurl.co/hPRg9

We're here for you!RAWF offers individual grief support sessions for our brain tumor community members to process their ...
06/10/2026

We're here for you!

RAWF offers individual grief support sessions for our brain tumor community members to process their unique grief experience.

Led by Grief Support Specialist Holly Gainsboro, these sessions will now be available on request, so you can get the support you need when it works for your schedule.

Instead of offering fixed time slots, please complete this form to request an appointment at your preferred date/time. https://zurl.co/AbCCk

Thank you to all who joined and supported our Brain Tumor Awareness Month campaign! Together, we rallied for research an...
06/08/2026

Thank you to all who joined and supported our Brain Tumor Awareness Month campaign! Together, we rallied for research and raised over $37,000 to support survivors of "benign" hypothalamic-pituitary brain tumors.

We are grateful to everyone who donated, shared their experience, and inspired a team to spread awareness that benign is not fine!

Just Worldwide has an exciting market research opportunity that involves a 60-minute web-assisted (Zoom) interview to be...
06/08/2026

Just Worldwide has an exciting market research opportunity that involves a 60-minute web-assisted (Zoom) interview to better understand the journey of patients living with hypothalamic obesity and caregivers.

We need your help to understand your journey. Interview participants will receive $150 in appreciation for their time upon successful completion of a scheduled interview.

The research is being conducted on behalf of a pharmaceutical company by RTI Health Solutions. Your opinion and data will be anonymously compiled into a research report for data analysis.

Please click on this link below if you are interested.

https://community.justworldwide. com/newdesign/site/just worldwide/indexrid.php? surveyID=i6ogi0li1dvu

Email [email protected] if you have any questions.

For more information about your rights please see our privacy notice, it is available at: https://zurl.co/ND1s6

Welcome Gabriel Rodriguez, MBA, PHR to the RAWF board!Gabe is an HR executive with extensive experience partnering with...
06/07/2026

Welcome Gabriel Rodriguez, MBA, PHR to the RAWF board!

Gabe is an HR executive with extensive experience partnering with C-suite leaders to drive organizational effectiveness, workforce strategy, and leadership development in high-growth, global organizations. Throughout his career, he has built and led HR Business Partner functions, advised leaders through periods of transformation, and implemented talent strategies that enable organizations to scale and perform at a high level.

Gabe brings a deeply personal connection to the mission of the Raymond A. Wood Foundation, as someone living with Craniopharyngioma. First diagnosed in 2018, his journey has included two surgeries—including a craniotomy—and multiple treatments such as chemotherapy (clinical trial) and proton beam radiation. His experience navigating complex treatment decisions and long-term care has shaped his commitment to advancing research, strengthening patient advocacy, and supporting others facing similar challenges.

We are excited to welcome him to the team!

Welcome Jennifer Chastain, MSN, RN to the RAWF Board of Directors!Jennifer Chastain, MSN, RN, is a rare disease patient ...
06/06/2026

Welcome Jennifer Chastain, MSN, RN to the RAWF Board of Directors!

Jennifer Chastain, MSN, RN, is a rare disease patient engagement and advocacy leader with more than 15 years of experience supporting patients, caregivers, and healthcare teams across clinical development through commercialization. Her background includes building and leading national clinical educator and patient engagement programs in complex and underserved disease states, with a focus on patient education, advocacy engagement, care coordination, and long-term support.

We are excited to welcome her to the team!

We’re almost 90% of the way to our goal.RAWF has raised $35,363 toward $40,000, and we’ve extended the Benign Is Not Fin...
06/05/2026

We’re almost 90% of the way to our goal.

RAWF has raised $35,363 toward $40,000, and we’ve extended the Benign Is Not Fine campaign and today is the last day to maximize our impact for survivors and families.

Benign does not mean fine.

Help us finish strong: give, share, or join a team! https://zurl.co/qucVg

We're celebrating the 2-year anniversary of the creation of the Hypothalamic-Pituitary Brain Tumors Patient Registry! H...
06/04/2026

We're celebrating the 2-year anniversary of the creation of the Hypothalamic-Pituitary Brain Tumors Patient Registry! Here is how your participation is making a meaningful impact:

Thanks to your continued engagement, the registry has now surpassed 400 participants. Of those enrolled, 54% are self-reporting and 46% are caregivers.

Our community reflects a diverse global population, with survivors across North America, South America, the UK, Europe, Asia, Australia, and Africa.

Additionally, 57% of participants are female and 43% are male, highlighting the broad reach and inclusivity of this effort.

Thanks to your contributions, two studies using registry data have been published - Understanding Treatment Priorities in Craniopharyngioma and Advancing Understanding of Hyperphagia in Craniopharyngioma.

Your contributions are helping move research forward and are making a real difference in improving the quality of life for craniopharyngioma survivors and their families! Learn more about the registry: https://zurl.co/B9XRE

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PO Box 991
Ocean City, MD
21843

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