A community of Scientists and Parents seeking to raise awareness, educate, and fund research on the #YWHAG genetic mutation.
Joined January 2024
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We’ve launched a new webpage highlighting published research from our research partners showcasing real progress in understanding YWHAG and moving closer to meaningful treatments and a cure.
ywhagfoundation.org/publicat…
#YWHAG #RareDiseaseResearch
Through the N=1 Collaborative, @CRiverLabs & 3billion are working to design a custom ASO therapy using deep sequencing + precision design.
A powerful step toward hope where “nothing can be done” is no longer the answer.
🔗 shorturl.at/oRaD7
Our new ASO Therapy webpage page is live! Discover how antisense oligonucleotides could potentially fix YWHAG mutations and what it’ll take to turn science into treatment.
ywhagfoundation.org/aso
#YWHAG #RareDisease #ASOTherapy
YWHAG Research Foundation retweeted
🌍When James was diagnosed with a rare genetic condition, his family turned to UAB's PMI. Learn what happened next: uab.edu/medicine/news/latest… @uabmedicine @uabheersink @YWHAGFoundation
YWHAG Research Foundation retweeted
Recently, @uabprecisionmed helped the Miner family turn their son’s genetic diagnosis into the basis for a global foundation. Today, the @YWHAGFoundation connects families worldwide, shares accessible information, and drives research toward a cure. 💙
🔗 brnw.ch/21wTiB9
Fast-track hope for YWHAG: screening FDA-approved drugs means we can jump ahead and dive straight into “Could this help now?” Early iPSC data looks promising, but every run needs funding. Chip in, share, or launch a mini-fundraiser today.
ywhagfoundation.org/drug-rep… #YWHAG
Grateful for our latest #YWHAG community meet! 🧬 Dr. Helen Chen shared promising research, we’re 51 families strong, and we need to fundraise to support CUREepilepsy grant. Missed it? Recap + ways to help: ywhagfoundation.org/post/ywh…
Exciting update from the YWHAG Foundation!
Our online store front is now live! We hope this shop will serve as a lunch page for community driven fundraising events and spreading awareness.
ywhagfoundation.org/shop
Our next YWHAG Community Meeting is coming up on Monday, May 19.
Join us for research updates, family stories, and ways to get involved in upcoming fundraisers. Email [email protected] if you dont have the Zoom link already!
We hope to see everyone there!
#YWHAG
Every tiny tooth speeds the hunt for treatments and a cure. Huge thanks to Dr. Reiter and the Tulane team for giving our community this incredible opportunity. Let’s turn smiles into science—share and get involved today!
#YWHAG #RareDisease #EpilepsyResearch
Today is Rare Disease Day 2025!
The YWHAG Research Foundation is standing up for families worldwide affected by the YWHAG genetic mutation. Rare diseases often go overlooked, but together, we can change that!
Every contribution makes an impact!
#RareDiseaseDay2025 #YWHAG
The YWHAG Foundation has been awarded a prestigious grant from the Czech Centre for Phenogenomics! This will fuel in-depth studies of the YWHAG mouse model, unlocking critical insights and bringing us closer to a cure. 🧬💙
Together, we can turn hope into reality.
On #InternationalEpilepsyDay, the YWHAG Research Foundation is proud to join the Rare Epilepsy Network, raising awareness of the YWHAG genetic mutation. Please share, consider donating, and help us bring hope to those affected by rare epilepsy.
#YWHAG #EpilepsyAwareness
The YWHAG Natural History Study is Officially Launching! We're thrilled to kick off this groundbreaking research to better understand the long-term effects of the YWHAG mutation.
✅ 100% online
🗓️ Ongoing for 2 years—first interviews starting now!
#YWHAG
Exciting news! The YWHAG Foundation has joined forces with RARE X to drive rare disease research!
Missed the Launch Party? Watch the recording & check out our new RARE-X WEBPAGE page—now live! Learn how to get involved.
ywhagfoundation.org/rare-x-d… #RareDisease #YWHAG #RARE
🚨 Friendly reminder! 🚨
Join us on **Jan 16th at 9 AM PT** for our Launch Party! 🎉 Parents & patients can sign up for the YWHAG x RARE-X data portal—a global platform to accelerate diagnoses & drive breakthroughs. 🌍
Can’t make it? No problem—it’s recorded!
#YWHAG
Exciting News! The YWHAG Research Foundation Natural History Study has been approved and is starting soon! If your family hasn’t enrolled yet, please consider joining us now: ywhagfoundation.org/natural-….
For those enrolled, watch your inbox for study updates. #YWHAG #raredisease
The #YWHAG Research Foundation is officially joining @RAREXOfficial to drive #RareDisease research forward! Join us on Jan 16, 9AM PT, for our Launch Party—parents & patients can enroll in our new YWHAG x RARE-X data portal. DM for the Zoom invite!
Year-End Giving!
Fuel breakthroughs for 2025 & beyond by donating to the YWHAG Research Foundation. In the U.S., every dollar is tax-deductible—so your gift has an even greater impact! Give the best holiday gift: hope.
Donate now: ywhagfoundation.org/donate
Join our Dave & Buster’s Fundraising Campaign—purchase a $20 Power Card online and 50% of every purchase supports the YWHAG Foundation’s mission. Your support ensures we can keep vital research going, and move closer to a cure.
shorturl.at/VsZjH
