Cure GRIN Foundation

08/25/2026

We are so proud to partner with Austin’s Purpose and support the incredible work they do alongside CureGRIN Foundation! ⛳️💙

Here are a few highlights from their annual golf outing! Austin’s Purpose was founded in 2015 in honor of Austin Wasielewski to help fund critical research for GRI Disorders.

Events like this show the power of community, dedication, and driving research forward. A huge thank you to everyone who came out to play, sponsor, and support this amazing cause.

08/23/2026

Look who just arrived at CureGRIN HQ! The very first batch of "Stripes" the GRIBRA has officially shipped, and we couldn't be more excited.

Want to get your hands on one of these exclusive plushies? It's simple: Join our CureGRIN Champions program at $25/month or more.

Why Become a Champion?
While our mission often moves in giant leaps, the day to day work of advocating for our families, funding research, and driving progress forward is a constant, steady process. By giving monthly, you provide the predictable support we rely on to keep moving at full speed every single day.

📦 The first batch is already going fast—claim yours!

👉 Join the CureGRIN Champions today: https://curegrin.org/donations/?give=PYEVM6DX

08/21/2026

Happy ! 💙

There's something special about the bond between a child and a horse. 🐴 Watching Bianca enjoy equine therapy reminds us that learning and growing can happen in so many different ways.

Way to go, Bianca! Thank you for sharing this special moment with us. We're cheering you on every step of the way! 💙

08/20/2026

We’re so proud to see CureGRIN Foundation Executive Director Keith McArthur featured in Simons Searchlight’s Leading the Way series!

In this interview, Keith reflects on his journey into rare disease advocacy, the lessons he’s learned along the way, and the incredible progress made by the CureGRIN community.

Rare disease advocacy is powered by passionate leaders, dedicated families, researchers, and a community that refuses to stop pushing forward. We’re grateful for Keith’s leadership and for everyone who continues to make the GRI community stronger. 💜

Read the full interview with Keith here: https://bit.ly/4wCyDOF

Keith shares his journey in rare disease advocacy and leading the CureGRIN community.

08/18/2026

Don't forget to register to attend our August GRI Community Chat on Wednesday, August 19, 5p EST | 10p BST

At our monthly GRI Community Chat, you'll find a safe space to connect with people who understand what you’re going through. Our virtual gatherings are relaxed spaces for community members to get to know each other and share resources.

• Join calls as often as you want
• Leave your camera off if it makes you feel more comfortable
• Hang back and just listen

You’re not in this alone.

Whether this is a new diagnosis or you have been navigating this disorder for many years, you can find support and valuable information at our gatherings.

08/17/2026

The Power of Us is back!

Starting September 21, join CureGRIN for our second annual, week-long peer-to-peer fundraising campaign!

Turn your family’s story into action—help grow our community, connect newly diagnosed families with resources, and accelerate the search for treatments and a cure.

🎉 Register your family fundraising page today so you’re ready to go!

08/14/2026

Happy ! 💙

Every new skill starts with practice, and Alex is putting in the work! Watching him tackle his therapy activities is a wonderful reminder that progress is built one step, one repetition, and one determined moment at a time.

Keep up the amazing work, Alex! Thank you for sharing your journey with our community and reminding us to celebrate every milestone along the way. 💙

08/11/2026

GeneDx is launching a new digital pathway for clinician-guided exome testing, and it’s a major step forward for ending the rare disease diagnostic odyssey. With 25% of U.S. patients facing wait times over a year for genetic care, allowing families to initiate exome testing online directly tackles healthcare access bottlenecks.

For children with unexplained global developmental delay, intellectual disability, or epilepsy, this simplified digital process delivers actionable insights sooner. In the CUREGRIN community, getting that exome answer is what unlocks precision care, research readiness, and community support.

Huge news for underserved families seeking answers. 👇

08/10/2026

🌍 Our Family Welcome Kit is now available in 11 languages!

We're excited to share that the CureGRIN Family Welcome Kit is now available in:

🇺🇸 English • 🇵🇱 Polish • 🇫🇷 French • 🇮🇹 Italian • 🇨🇿 Czech • 🇨🇳 Chinese • 🇵🇹 Portuguese • 🇳🇱 Dutch • 🇪🇸 Spanish • 🇯🇵 Japanese • 🇩🇪 German

…and even more languages are currently in translation!

Inside the Welcome Kit, you'll find:
💙 Easy-to-understand information about GRI disorders
📖 A step-by-step guide to help navigate your journey
🤝 Resources and connections to our global GRI community

Whether you're newly diagnosed or supporting a loved one, our Welcome Kit is designed to help you feel informed, connected, and supported from the very beginning.

✨ Request your FREE Family Welcome Kit and select your preferred language using the link in the comments. If you have any questions, email [email protected].

A heartfelt thank you to our amazing volunteer translators and to the Amgen RAREis grant for making this resource possible. 💙

08/07/2026

Happy ! 💙

There's nothing quite like a day in the pool with Dad! 💦 Watching Jon splash, play, and enjoy time together is a sweet reminder that some of the best moments are the simple ones.

Thank you for sharing this special memory with us, Jon. We hope your weekend is filled with laughter, family time, and plenty of fun! 💙