@rawoodfoundation.bsky.social
The mission of the Raymond A. Wood Foundation is to drive research and advocate for treatment outcomes to improve quality of life for hypothalamic-pituitary brain tumor survivors.
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.
24.02.2026 16:44 โ ๐ 0 ๐ 0 ๐ฌ 0 ๐ 0
We've been selected as a charity partner for the 2026 Philadelphia Marathon Series Nov 20โ22 and we'd love for you to join Team RAWF!
This opportunity is open to survivors, caregivers, donors, friends, and even first-time runners โ 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
Join us for our Survivor Support group tonight at 7pm EST, hosted by brain tumor survivor Jason Burris!
Email outreach@rawoodfoundation.org to join.
This Valentineโs Day, skip the flowers and chocolates, and show your love in a special way! A gift to The Raymond A. Wood Foundation will give meaning to your day and will share love and hope with others.
Give Today and Share Your Love: zurl.co/7KAfP
Have you updated your information in the Hypothalamic-Pituitary Brain Tumors Patient Registry yet?
zurl.co/TXpGc
Join us for an exciting free webinar with Rhythm Pharmaceuticals on Wednesday, February 18th at 7:15pm EST!
A Path to Diagnosis:
Provider and Patient Perspectives on a Diagnosis of Acquired Hypothalamic Obesity (HO)
Register here: zurl.co/yibOz
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
Did you know that we offer several FREE monthly support groups?
The next Survivor Support Group is Feb 17th at 7pm.
The next Caregiver Support group is Feb 10th at 8pm.
Email outreach@rawoodfoundation.org to learn more!
We've been making progress on the Hypothalamic-Pituitary Brain Tumors Patient Registry, but we need more caregiver voices!
Please help us by updating your information if youโre already a participant or joining the registry and filling out the surveys!
zurl.co/hRanl
Show some love and get your Valentineโs Gifts from our shop!
If you want to give the gift that gives back, check out our shop for t-shirts, sweatshirts, and hats for adults and kids
zurl.co/TWuzE
#givehope #shopsmall #supportsmallbusiness
What's happening in February!
Check out some upcoming events and RAWF initiatives and comment below if you want to get involved!
Team RAWF is getting ready to run the United NYC Half Marathon and we want you to join the team! There is 1 spot left on our team that guarantees entry into the race.
DM or email us if you want more info and to join!
#NYCHalfMarathon #UnitedNYCHalf #movingforamission
Adrenal fatigue vs adrenal insufficiency: check out the blog for a dive into what is adrenal insufficiency, its complications, and the adrenal fatigue vs adrenal insufficiency.
zurl.co/Tl6AK
Join us for our Survivor Support group tonight at 7pm EST, hosted by brain tumor survivor Jason Burris!
Email outreach@rawoodfoundation.org to join
Weโre deeply thankful to everyone who has participated in Art of Surviving and contributed their art, stories, and hearts over the years.
Our future work will continue to honor that same spirit and we appreciate your continued support as we grow and evolve together.
We're happy to share some of the most recent insights from our patient registry! Thank you to everyone who has joined and updated their information.
Become an active voice in research. Join our patient registry: zurl.co/pNSuS
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
Registration is now open for Rare Disease Week 2026 on Capitol Hill. This free multi-day event, hosted by the Rare Disease Legislative Advocates, brings together rare disease advocates from across the country to make their voices heard.
Register for #RareDC2026 zurl.co/rLFj5
After a holiday hiatus, our monthly support groups are back!
January 13th 8pm - Caregiver Support Group, hosted by caregiver and RAWF board member Eugenie Hsu
January 20th 7pm EST - Survivor Support group, hosted by brain tumor survivor Jason Burris
Email outreach@rawoodfoundation.org to join.
TODAY IS THE LAST DAY!
๐ Take the survey before midnight tonight: zurl.co/BVBuC
Share your experience with acquired hypothalamic obesity and help our Canadian community!
You do not need to live in Canada to take part!
Happy New Year! The Raymond A. Wood foundation is off to a busy start. Here are just a few things to look forward to in January!
Email outreach@rawoodfoundation.org for more info about these exciting initiatives!
โNever give up. Just keep looking forward.โ
This is what one survivor shared when asked what helps most.
As we close out the year, we are grateful for this community and for the hope you help make possible.
Happy New Year, from the Raymond A. Wood Foundation!
Don't forget to take the survey to share your experience with acquired hypothalamic obesity!
You do not need to live in Canada to take part.
Deadline: Sunday, January 4 (11:59 PM ET)
Take the survey now: Don't for zurl.co/BgGqn
Merry Christmas from the Raymond A. Wood Foundation team!
25.12.2025 14:42 โ ๐ 0 ๐ 0 ๐ฌ 0 ๐ 0
Ten years later, the challenges havenโt stopped. But neither has our fight.
This year has been one of our hardest. And it is exactly why this work matters more than ever.
Thank you for standing with families navigating the long-term realities of brain tumors and survivorship.
There is still time to share your experience with acquired hypothalamic obesity and help our Canadian community! Take the survey today โ you do not need to live in Canada to participate!!
zurl.co/WIeE0
The holiday season is often portrayed as a joyful time filled with perfect celebrations. But in reality, many caregivers are simply struggling to get through the day.
Read our latest blog post for helpful tips on Navigating Grief During the Holidays
zurl.co/Vf277
๐ฃ Have you or someone you love been diagnosed with acquired hypothalamic obesity? We want to hear from you! We are conducting a survey to understand the real-life impact of aHO on patients and caregivers.
โ
Take the survey today โ zurl.co/ddwmv
