Foundation for Casey's Cure/ Alliance Against HMERF

09/30/2026

Had the chance to meet another 1-in-200,000 patients in Chicago this past weekend at MDA Engage Chicago. Met lot of great people waiting for their disease to matter enough to the MDA to put in on the sites. .

💕Saw love first hand as spouses, girlfriends, boyfriends, sisters and children helped out their MD person💕

We're working hard to play ah the science faster than the disease. Great to meet you, B... hang in there - we're working as hard as we can!

08/29/2026

Time Stealing... from rare-disease patient perspective...

https://chrisduane819.wpcomstaging.com/?p=138793

Aynslie Joan Cunningham Chris Duane New Community Church - LaGrange GA City of LaGrange Georgia Government Joshua Duffield U.S. Chamber of Commerce Foundation for Casey's Cure/ Alliance Against HMERF Downtown LaGrange Visit LaGrange Pretty Good Books Brian Fox

07/15/2026

🎉 Excited to receive the GrantWatch 2026 Silver Visibility Badge! Thank you, GrantWatch, for this recognition. Proud to be part of a community dedicated to helping organizations find funding opportunities and create impact. This allows us to find funding opportunities to help more HMERF patients!

Visit our page here: https://www.grantwatch.com/foundation/1602239/

05/22/2026

BREAKING NEWS! The first and only HMERF patient registry is now online! Please pass the word to the HMERF community and support the researchers looking for a cure. Register here: https://cords.sanfordresearch.org/activation-form . Joan Cunningham Team Titin Washington University in St. Louis

Please answer a few questions to help us create your participant account, If you have any questions, please contact [email protected] or 1 (877) 658-9192.

03/04/2026

💕A SPECIAL SHOUT OUT TO OUR TWO NEW MONTHLY RESEARCH PARTNERS! 💕

Because of your $25/month donation, we are that much closer to buying the wearable trackers that will provide valuable data to our team about Casey's current health and her progressive decline, which will become a valuable informationas we move toward an investigational trial... Thank you so very, very much...💕

Join us here 👉 👉 👉 https://gift.idonate.com/alliance-against-hmerf/ResearchPartner

Wellstar West Georgia Medical Center

03/03/2026

🌍🐾 Happy World Wildlife Day! 🎉 Today, we celebrate the beauty of our planet’s incredible creatures and their habitats. Let’s honor nature's gifts by embracing conservation. 🌿✨ Share your favorite wildlife moments and remember: every small action counts! Together, we can protect our wild friends! 🌺💚

03/03/2026

Muscular Dystrophy... Myopathy ...? What's the difference?

03/01/2026

It’s the last day of . There’s still time to give.

https://gift.idonate.com/alliance-against-hmerf/ResearchPartner

02/28/2026

Thank you so much to our newest monthly Research Partner! We're only 7 Partners away from our goal of 20 Monthly Research Partners by the end of today, the last day of Rare Disease Month.

Think of helping HMERF patients as if they were sisters, brothers, cousins, husbands or wives... These patients have lineages of 7 and 8 people who have died from or face a death very similar to the painful death of ALS patients. Very different diseases but very similar outcomes. Long and painful suffering.

https://gift.idonate.com/alliance-against-hmerf/ResearchPartner

Your donation of $25, $10, or $5/month will sustain our work by creating continuity in funding we can use to sign new contracts to continue the work..,

I challenge you to look at your family member and ask yourself: would I want to have people save them? You can... so please... give today.

02/21/2026

We began this month with 2 Monthly Research Partners supporting our translational development work. Today, we have 12.

We are 8 away from reaching 20 — the stable base that allows us to move forward with our next-stage ASO development milestone.

Rare Disease Month ends in one week. If you’ve been considering stepping forward, now is the time.

Become a Monthly Research Partner at $25 per month and help keep this work moving.
🔗 Link in bio.