Fam177a1 Research Fund

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Fam177a1 Research Fund

We unite the global FAM177A1 community to accelerate research and the development of treatments. https://linktr.ee/Fam177a1

03/17/2026

💙 3rd Annual FAM JAM 💙

Look at these kids.

Arms wide open. Eyes to the sky. Full of the kind of hope that takes your breath away.

Every one of them is fighting FAM177A1 Disorder — an ultra-rare genetic disease that affects the brain and body, stealing milestones. When a disease is this rare, there is no roadmap. No approved treatment. No cure. Just families finding each other in the dark and refusing to give up.

That's why the FAM177A1 Research Fund exists — and why we need you at The FAM JAM. Every dollar raised goes directly to the researchers working to understand this disease, unlock its mysteries, and bring real treatments one step closer.

These kids are already soaring, despite their challenges. Come help give them the wind beneath their wings. 🪽

🎟 Get your tickets & donate: fam177a1.ejoinme.org/famjam2026

03/10/2026

The FAM JAM is back on May 29th! Relive the magic. This year we’re Soaring For a Cure. Tickets are LIVE!
🎟️ https://fam177a1.ejoinme.org/famjam2026

02/25/2026

Rare Disease Day 2026—We’ve Never Been Closer

Every day is Rare Disease Day for families in the FAM community. But Rare Disease Day 2026 feels different.

Life-changing treatments have never felt closer.

In our latest Letter from Our Founder, we reflect on why life-changing treatments have never felt closer—and how collaboration between families, researchers, policymakers, and supporters is accelerating progress for children living with FAM177A1.

When this community comes together, progress gains speed—and hope turns into action. Happy Rare Disease Day from our community to yours!

👉 Read the full Letter from Our Founder: https://www.fam177a1.org/post/letter-from-our-founder-rare-disease-day-2026-we-ve-never-been-closer

02/20/2026

We are excited to debut a new video at The FAM JAM on May 29, 2026!

02/06/2026

Get ready to soar! ✈️ The 3rd Annual FAM JAM – Soaring For A Cure Gala is officially on the horizon! We’re moving to an incredible new venue—SoDo Park in Seattle—for our most electrifying night yet. Mark your calendars for May 29th and join us for an evening where hope takes flight. 🎟️ Tickets go on sale March 1st! Stay tuned for more details!

02/04/2026

🐸💙 Big leaps start small—and sometimes they start as tadpoles.

Because of our donors’ generosity, we’re funding an exciting new tadpole model to accelerate research for FAM177A1-related neurodevelopmental disorder (FRND).

Thanks to over $40,000 raised through Giving Tuesday and year-end generosity, we are supporting a dedicated PhD researcher, Rosie Currams, whose work focuses on understanding the FAM177A1 gene using an innovative frog (tadpole) model at the .

So why tadpoles? Because this tiny model lets scientists see how the FAM177A1 gene affects brain development. It also gives researchers a way to test potential treatments. That speed matters when families are waiting each day for treatments.

Thank you to our community for supporting this groundbreaking science. Welcome Rosie to the FAM!

👉 Read the full blog post: https://www.fam177a1.org/post/leaping-forward-our-groundbreaking-tadpole-model

12/30/2025

When Love Isn't Enough—Your Gift Matters!

12/03/2025

We are in absolute shock…in the best way. 💙
You helped us hit our $10k match on Giving Tuesday and raised $23,504 for our FAM FRNDs!

From the FAM177A1 family to yours—thank you.
Thank you for believing in Charlotte & Cooper, Emma & Bella, and every FAM FRND.

Because of you, we can fund even more groundbreaking research. Because of you, hope feels real.

And to everyone who “donated their age” after Peter & PJ’s video…you filled this week with so much joy. 💙

Together, we’re creating:
✨ Progress You Can Feel
✨ Joy You Can Hear
✨ Hope You Can See

You showed up yesterday with such heart. Thank you for being a part of this unstoppable movement of hope.

09/16/2025

We’re honored to be selected by CURE Epilepsy as co-funding partners for the new Rare Epilepsy Partnership Award — a major step forward in advancing research for FAM177A1-related disorder.

This grant supports groundbreaking work led by Dr. Berrak Ugur and her team at Yale University, who are using patient-derived brain cell and organoid models to study how FAM177A1 functions in the human brain. Their research will help us:

🧠 Understand how FAM177A1 impacts brain development
🔬 Identify the protein’s cellular role and interactions
💡 Lay the groundwork for future targeted therapies

Read more about this rare disease funding opportunity and what it means for our community: https://www.fam177a1.org/post/rare-disease-funding-cure-epilepsy

Huge thanks to for believing in this work and helping us move faster toward a cure. And thank you to our donors for matching CURE Epilepsy's $50,000 grant, dedicating a total of $100,000 to FAM177A1 research!

Together, we are accelerating cures and creating a brighter tomorrow for our FAM FRNDs.

08/06/2025

🌟 New on the Blog!🎧 Real stories. 💙 Real hope.

We’re spotlighting 4 inspiring voices from the FAM177A1 community in the new podcast series on Rare Awareness Radio!

✨ Jill Hawkins: A 15-year diagnostic journey → fo

🧬 Dr. Nicole Legro: Defining FRND + uniting families

👩‍👧 Janet Vasquez: A mom’s story of advocacy & strength

🔬 Dr. Clement Chow: Repurposing drugs using a fly model

These stories remind us why we do this work—for answers, for treatments, for connection. 💙

👉 Tap the link in bio to read + listen!

08/01/2025

Dock Hop: A Day of Gratitude, Community, and HOPE!

What an unforgettable day on Lake Washington for the FAM JAM Dock Hop event! 🌞

This incredible day was made possible by the generosity of Erika & Greg Brown and Lyndsey & Brad Gillis, who "won" the Dock Hop auction item at our FAM JAM Fundraiser—raising critical funds for the FAM177A1 Research Fund. Their winning bids helped fuel our mission to develop life-transformative treatments for FAM177A1-Related Neurodevelopmental Disorder (FRND).

The magic didn’t stop there! Each couple invited four friends to join them aboard two beautiful boats, expertly captained by Danika & Jeremy Knievel and Grover Holtzclaw & Dan Nordale. As they cruised across the sparkling waters, they docked in front of stunning Mercer Island homes, welcomed with delicious food and drinks and even a shot-ski by our gracious hosts: Karla & Richard Aylen, Kelly & Jim Weisfield, and Kristin & Greg Hart.

A special shoutout to Uncle Matt Minich for crafting the awesome Dock Hop coozies—keeping our drinks cool and adding an extra touch of fun to the day!

The sun shone, the laughter flowed, and the sense of community was overwhelming. This day was the perfect embodiment of the love, support, and belief that fuels our foundation. You all showed up—not just for a good time, but for a greater purpose. Together, you’re helping turn hope into action for our FAM Friends.

From the bottom of our hearts, THANK YOU. Thank you to our generous bidders, our amazing captains, our incredible hosts, and everyone who joined in the fun. The Dock Hop truly felt like the Dock HOPE—a reminder of what we can achieve when we come together.

Here’s to more sunshine, more joy, and more breakthroughs ahead! 🎉💙

07/25/2025

For genetic diseases like FAM177A1-related disorders, genetic testing is so important to getting a diagnosis! Join us and StartGenetic.org today for Genetic Testing Action Day and get answers.

Jill Minich Hawkins

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Seattle, WA

Website

http://www.curefam.org/, https://www.fam177a1.org/donate2025?utm_campaign=05c9be12-dc4e-408f-953f-8eee6a34f161&utm_sourc

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