Starting soon! @theabta.bsky.social webinar on Helping Kids Understand Brain Tumors.

Registration still open, so join now!
zurl.co/EIuiD

Join us for our Survivor Support group tonight at 7pm EST, hosted by brain tumor survivor Jason Burris! Email outreach@rawoodfoundation.org to join.

Join Rhythm Pharmaceuticals for the Understanding Acquired Hypothalamic Obesity: Disease Education and Treatment Options webinar, featuring Dr. Blevins, UCSF Medical Center, and Paisley, patient ambassador Apr 28 at 7pm ET!

Register here: zurl.co/4Np1J

Applications are now open for the RAWF Patient Advisory Committee!

This is an opportunity for survivors and caregivers to shape the future of research, advocacy, and community support for hypothalamic-pituitary brain tumor patients.

Make an impact: zurl.co/NTjP1

Join us for our Caregiver Support group tonight at 8pm EST, hosted by caregiver and RAWF board member Eugenie Hsu! Email outreach@rawoodfoundation.org to join

We're running the 2026 Philadelphia Marathon Series Nov 20–22 and we want you to join us!

Team RAWF will raise awareness & funds for our patient community. You can run, walk, fundraise, or simply learn more. Contact us to learn more or join the team!

We are producing a series of videos to highlight the patient/caregiver experience w hypothalamic-pituitary brain tumors & want to hear from you!

Please complete this form if you live within 1 hour of Philadelphia or Washington DC and would like to help! zurl.co/gVenN

We are getting ready for Brain Tumor Awareness Month and our latest merch is here to spread awareness of the challenges faced by survivors of benign brain tumors! Shop the Benign Is Not Fine collection to support the cause!

zurl.co/tMmah

We're proud to share our published study from the Hypothalamic-Pituitary Brain Tumors Patient Registry on hyperphagia in craniopharyngioma —a serious & often overlooked condition.
This was made possible by our community. Your voices are driving real change
Read more about the study zurl.co/l1DZd

Join us for some of our April events and initiatives! Learn more on zurl.co/1WyNl

RAWF encourages members of the hypothalamic-pituitary brain tumor community to apply for the #RAREis Scholarship Fund! Powered by @EveryLifeOrg 58 scholarships of $5k will be awarded to those w rare diseases pursuing higher education in Fall. Learn more: zurl.co/4wl5c

We are producing a series of videos to highlight the patient/caregiver experience w hypothalamic-pituitary brain tumors & want to hear from you! Please complete this form if you live within 1 hour of Philadelphia or Washington DC and would like to help! zurl.co/cZJGt

The FDA has approved IMCIVREE (setmelanotide) for aHO—a condition so many of our families live with every day.

Learn more about the impact this will have on our community in our latest editorial, written by Eugenie Hsu, Ph.D caregiver and Chairperson of the RAWF board.
zurl.co/5z2z8

Huge news! The FDA has approved IMCIVREE (setmelanotide) for aHO—a condition so many of our families live with every day.

For years, patients and caregivers have fought to be heard, and pushed for real solutions. This approval is a reflection of that strength!

We are proud to announce our first study, Treatment Priorities in Craniopharyngioma: Perspectives of Survivors and Caregivers has been published! Thank you to RAWF Scientific Director Nathalie Kayadjanian & Board Chair Eugenie A. Hsu for their efforts! Read more on our blog! zurl.co/PP9Qp

Grief comes in many forms. It's not just about a death, but the feelings that come from diagnosis, sharing the news with friends, and family, and processing the sudden ways your life will change.

Learn more about our one-on-one grief support sessions❤️
zurl.co/x2zVO

Join us for our Survivor Support group tonight at 7pm EST, hosted by brain tumor survivor Jason Burris!

Email outreach@rawoodfoundation.org to join.

#supportgroup #braintumor

Team RAWF Takes on NYC to Support Brain Tumor Survivors!  - Raymond A. Wood Foundation The streets of New York City were full of energy, optimism and determination as a dedicated group ... Read more

Team RAWF took on NYC in the United Half Marathon and raised over $17k to support our mission! Read more about the incredible team and what drew them to the cause.

zurl.co/khz0l

Team RAWF is a charity partner for the United NYC Half Marathon and Midelgie is on the team!

"Being able to raise funds for this amazing foundation has been a privilege and an added bonus to this whole experience."

Support her run! zurl.co/Wmei3

We're moving for a mission! Team RAWF is a charity partner for the United NYC Half Marathon and Amy, Executive Director of the Raymond A. Wood Foundation is one of our runners!

Support Amy's run zurl.co/4Qb9O

Join us for our Caregiver Support group tonight at 8pm EST, hosted by caregiver and RAWF board member Eugenie Hsu!

Email outreach@rawoodfoundation.org to join

Meet Erin Centofanti one of the Team RAWF runners for the United NYC Half!

After surgery for a pituitary tumor in 2022, she joined the board of RAWF to help others who suffer from hypothalamic-pituitary tumors. Read her story and support her run! zurl.co/ND2L7

Team RAWF is a charity partner for the United NYC Half Marathon and we're happy to introduce our runners! Meet Faith, who is running in honor of Alex Wood.

"Every mile I run is for his resilience, courage, and continued journey."

Support Faith: zurl.co/WGB8V

One-on-one grief support sessions with Grief Support Specialist Holly Gainsboro, are now available on request, so you can get the support you need when it works for your schedule!

Instead of offering fixed time slots, you can now request an appointment at a time that works for you! zurl.co/VP3N2

@Eton Pharmaceuticals recently announced that the U.S. FDA has approved Desmoda™ (desmopressin acetate) oral solution, the first and only FDA-approved oral liquid formulation of desmopressin!

Learn more about this exciting development! zurl.co/MkliO

Hello March! Here are some exciting updates from Team RAWF!

It's Rare Disease Week! This week we will shine a light on the rare diseases our patient community faces, starting with craniopharyngioma - a brain tumor that is often labeled "benign," but can cause lifelong challenges with hypothalamic syndrome, obesity and endocrine issues.

We've been selected as a charity partner for the 2026 Philadelphia Marathon Series Nov 20–22 and we'd love for you to join Team RAWF!

This opportunity is open to survivors, caregivers, donors, friends, and even first-time runners — everyone is welcome.

Email us to learn more!

We need to hear from you!

We've been making progress on our Hypothalamic-Pituitary Brain Tumors Patient Registry, but we still need more caregiver voices.

Please take the time to help move us to better care and a stronger community.

zurl.co/47vhd

Don't miss tonight's webinar with Rhythm Pharmaceuticals at 7:15pm EST!

A Path to Diagnosis:
Provider and Patient Perspectives on a Diagnosis of Acquired Hypothalamic Obesity (HO)

Register here: zurl.co/zLPP7