BBDF Blog

People Magazine has just published an article highlighting Garland’s quest to raise a million dollars for his sister.

Thanks again to everyone who helped Garland hit his goal!

BBDF is actively pursuing a pharmaceutical partner to support the clinical trial and commercialize the treatment.  Donations are rolling in and every additional dollar raised by Garland’s campaign will help offset activities required by the FDA to start the trial.

Donate today.

Rare Sisters brought together a community of over 1,000 supporters on Sunday, April 28 for the fund’s first-ever Expect Miracles 5K. Participants were treated to a beautiful Colorado Spring day at Lake Arbor in Arvada, where runners and families enjoyed a whole host of outdoor activities as well as a crowdsourced art project and local vendor fair. The event raised nearly $40,000 to support juvenile Batten disease research, advancing us closer to a clinical trial and viable treatment. Thank you to all the runners (present and virtual), supporters, sponsors, and volunteers who came together to make the first annual Expect Miracles 5K a tremendous success. Special thanks and recognition to Beth Fries, mother and co-founder of Rare Sisters, who organized the Expect Miracles 5k and inspired good among so many.

Blue skies, sunshine, and near-perfect temperatures provided the ideal setting for the BBDF Youth Leadership Committee’s (YLC) second annual Taking a Swing at Batten golf tournament. On Sunday, April 14, YLC members, together with friends, family, and local supporters, teed up at Topgolf Austin to help raise nearly $9,000 to support Batten disease research. Thank you to everyone came out and took a BIG swing at Batten and to our generous sponsors: Amicus Therapeutics, Wadsworth Golf Charities, Fosforus, Jenna Rose, Elle McCartt, Carson Kurad, and Jackson Hanson. Special thanks to President Carson Kurad, President-Elect Elle McCartt, and Member-At-Large Grace Meinzer for their hard work organizing this event.

Friends and supporters of Beyond Batten Disease Foundation gathered on Sunday, April 7 for the 11th annual Battlin’ Batten in Baffin Fishing Tournament in Baffin, TX. The event raised more than $65,000 to support Batten disease research, bringing the event’s 11-year fundraising total to more than $400,000. Thank you to Neal Meinzer, who hosted the incredibly successful event, J. McCartt, the MVP of fundraising, and to all the fishermen and supporters who donated on their behalf. We also wish to congratulate this year’s winning team, the Trout Snobs (pictured above, left to right: Len Wright, Ken Adolph, Jim Arnold, and Kelly Dwyer).

Parents and Rare Sisters founders Jon and Beth Fries appeared on CBS Denver on Monday, April 8, where they shared the story of their two daughters Cecilia and Lilly who are currently living with juvenile Batten disease. Jon and Beth also invited the community to participate in the inaugural Expect Miracles Rare Sisters 5K, taking place Sunday, April 28 at Lake Arbor in Arvada, Colorado—sign up or make a donation at https://beyondbatten.org/events/expect_miracles_5k/