YWHAG Research Foundation
@YWHAGFoundation
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A community of Scientists and Parents seeking to raise awareness, educate, and fund research on the #YWHAG genetic mutation.
Joined January 2024
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. #YWHAG #RareDisease #ASOTherapy
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RT @uabprecisionmed: 🌍When James was diagnosed with a rare genetic condition, his family turned to UAB's PMI. Learn what happened next: htt….
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RT @uabmedicine: Recently, @uabprecisionmed helped the Miner family turn their son’s genetic diagnosis into the basis for a global foundati….
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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. #YWHAG
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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:
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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.
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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 info@ywhagfoundation.org if you dont have the Zoom link already!. We hope to see everyone there!. #YWHAG
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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
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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
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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.
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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
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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
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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. #RareDisease #YWHAG #RARE
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🚨 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.
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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: For those enrolled, watch your inbox for study updates. #YWHAG #raredisease.
ywhagfoundation.org
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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!
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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:
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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.
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Join the YWHAG community at the RARE-X Launch Party on Jan 9, 9 AM PST! Register together for the YWHAG Data Collection Program & help accelerate research toward a cure. RARE-X reps will answer your Q's. Mark your calendars & email info@ywhagfoundation.org for the Zoom invite!.
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This Giving Tuesday, we invite you to join us in making a difference for families affected by the ultra-rare YWHAG genetic mutation. Every contribution, big or small, fuels our mission to find a cure and improve the lives of those we serve. Visit today.
ywhagfoundation.org
Your donation can make a significant difference in the lives of people with YWHAG genetic mutation. With your support, researchers can continue to investigate the causes of this condition, develop...
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