Written by Beth Fries

Imagine turning your journey into a powerful force for change. That’s exactly what’s happening with the BDSRA Foundation’s Fam Funds—and the impact has been incredible. In just a short time, 20 Fam Funds have already raised over $20,600 since January 2025 by sharing their stories through social media and email. But this is just the beginning.

Our goal? 50 active Fam Funds by June 9th—International Batten Disease Awareness Day. With the support of a dedicated Fam Funds liaison, families are not just raising awareness, they’re also hosting fundraising events that will drive real progress toward advocacy, research, and ultimately, a cure for Batten disease.

Your story has the power to inspire action. Fam Funds gives you a personalized webpage to share your Batten journey, educate your community, and rally support. Plus, BDSRA is here to help with fundraising logistics—from event planning to registration, graphic design, and more, so you can focus on making an impact.

The Beedle Family

The Becker and Sims Families

The Beedle Family has done an amazing job of engaging their community through local events.

Each year, they participate in the Gallery of Trees, which showcases local non-profits and provides an avenue for advocacy and awareness for Batten disease (right). This year, the Beedles and several other Fam Funds are hosting a 5k walk/run event for Batten Awareness Day. These events are now much easier to host thanks to the support of BDSRA.

We have also seen unique fundraising efforts from the Becker and Sims families, who hosted a Kendra Scott jewelry event that generated over $2,000. We are also grateful to the Palermo family and all who participated in the Panda Express fundraiser event, which generated over $2,300. It’s simple efforts by our families that will help get us closer to our mission goals.

It is not too late to get involved—Fam Funds are also participating in a fun and easy Kona Ice Fundraising Event for Batten Awareness Day. Fam Funds can register to host a Kona Ice truck in their community, and BDSRA will help set up Kona Ice to come to your location (home, park, pool, etc.) on Saturday or Sunday, June 7/8, 2025, for Batten Awareness Day. BDSRA will design and send yard signs to post in the area and social media graphics. This event is great for advocacy, awareness, and fundraising.

Now is the time to take action. Your community wants to help—give them the opportunity! If you’re ready to launch a Fam Fund or participate in an upcoming event, please contact Beth Fries at beth@bdsrafoundation.org. Together, we can make a lasting impact—one story, event, and Fam Fund at a time.