Providing quality of life support for hypothalamic-pituitary brain tumor survivors 🧠#braintumor #craniopharyngioma
Joined February 2017
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852 Photos and videos
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 zurl.co/XT0we
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The EveryLife Foundation for Rare Diseases @EveryLifeOrg is excited to invite families to apply for travel stipends to attend Rare Family Day 2026 on October 3.
Apply for a travel stiped before June 26th! zurl.co/1OEfc
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“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
The full conversation on Uscreen zurl.co/E9JJW
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We're here for you!
RAWF offers individual grief support sessions led by Grief Support Specialist Holly Gainsboro, now available on request. Get the support you need when it works for your schedule.
Request an appointment here: zurl.co/AbCCk
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Thank you to all who joined and supported our Brain Tumor Awareness Month campaign! Together, we raised over $37,000 to support survivors of benign brain tumors.
We are grateful to everyone who donated, shared their experience, and spread awareness that benign is not fine!
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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.
Help us finish strong! zurl.co/qucVg
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We're celebrating the 2-year anniversary of the Hypothalamic-Pituitary Brain Tumors Patient Registry! Your contributions are helping move research forward and improve the quality of life for craniopharyngioma survivors & their families. Learn more: zurl.co/B9XRE
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Our Benign Is Not Fine Campaign has been extended just a few more days! Donate before June 5th to help us reach our goal! zurl.co/HpG47
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June updates from Team RAWF!
Join us for support, research, and continue the momentum of our brain tumor awareness campaign, which has been extended a few more days. If you missed the chance to support, it's not too late!
zurl.co/ixfAY
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Our rally has raised just over $35K, and we are almost to our goal.
Today is the last day to support our Brain Tumor Awareness Month campaign and raise awareness that BENIGN IS NOT FINE!
Donate NOW to stand with survivors, caregivers, and families.
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Brain Tumor Awareness Month is almost over, but we are not finished.
Benign is NOT fine.
Support our Rally for Research to help make benign truly better
zurl.co/AgPaY
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It's the last week of Brain Tumor Awareness Month, and thanks to you, we have raised almost $25,000! These critical funds will help us support brain tumor survivors with research, advocacy, and support.
Donate today to turn awareness into action zurl.co/h0lbf
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Even a “successful” treatment for a craniopharyngioma can lead to a lifetime of medical conditions. Research has helped us better understand these conditions & the impact on survivors. This Brain Tumor Awareness Month, help us make benign truly better zurl.co/a52Ms
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Brain Tumor Awareness month is almost over, but you can wear your strength year-round! Our Benign Is Not Fine sweatshirts and t-shirts are available with the logo printed front or back. Get yours today to show your strength! zurl.co/eltqW
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May is Brain Tumor Awareness Month, and we are on a mission to spread awareness that benign is not fine. By donating today, you can help us make a difference in research and advocacy for hypothalamic-pituitary brain tumor survivors.
zurl.co/Lkg2d
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Hypothalamic obesity is a rare & serious condition that can develop after treatment for craniopharyngioma. Support our Benign Is Not Fine Rally for Research to help us make continued research and support for survivors of this condition possible.
zurl.co/XM0EX
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Join us for our Survivor Support group tonight at 7pm EST, hosted by brain tumor survivor Jason Burris! Email outreach@rawoodfoundation.org to join.
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This brain tumor awareness month, we are spreading awareness that benign is not fine! Thanks to your generous support, we have raised over $20K for research & advocacy for hypothalamic-pituitary brain tumor survivors. Help us take it to the next level! zurl.co/DNlby
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The info you need is now available on demand! Join us on U Screen, our new on demand video streaming platform.
Stream all the content from our 2023 and 2025 Pituitary Brain Tumor Family Conference, and more content will be loaded seasonally.
zurl.co/tvRTH
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We’re halfway through the month and thanks to you, we have raised over $19,000! These critical funds will help us support brain tumor survivors with research, advocacy, and support.
Help us rally to the next level and make an even bigger impact zurl.co/zoFA2
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