Author Archives: BeyondBatten

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/

Friends and supporters of Beyond Batten Disease Foundation gathered on Sunday, April 7 for the 10th annual Battlin’ Batten in Baffin Fishing Tournament in Baffin, TX.

The event raised more than $60,000 to support Batten disease research, bringing the event’s 11-year fundraising total to more than $400,000.

The Jackson, MI community came out in strong support of Bind Up Batten’s inaugural Batten Bash fundraising event, which raised more than $30,000! Simply incredible. With hors d’oeuvres, drinks, and a silent auction, guests enjoyed an evening of fun and giving at the historic Cascades Manor house. Thank you and congratulations to Angie Lefere for organizing and hosting such a successful fundraiser. And thank you to all the friends and generous sponsors for your support, which allows BBDF to continue leading the way in scientific research with the hope of finding treatments and a cure for juvenile Batten disease for Charleston and children like him.

There are ample opportunities during the month of April to get involved and support BBDF. Make sure to visit each event page for information on how to participate, including options for those who can’t physically be present. 

• Kelly Wynne Dare to Donate | All March | Online: For the month of March, Kelly Wynne will donate 10% of all purchases of the Soco Crossbody to BBDF.
  
  
• Tiles Gone Wild! Mah Jongg Tournament | Sunday, April 1 | The Woodlands, TX 
  
  
• HOPE on the Green | Monday, Aril 8 | The Woodlands, TX
  
  
• Taking a Swing at Batten | Sunday April 14 | Austin, TX
  
  
• ORS Kids Superhero Run | Saturday, April 27 | Jackson, MI
  
  
• Expect Miracles 5K | Saturday April 28, Arvada, CO

Due to the weather conditions (being at or below freezing with wind chill and moisture), the Run to the Sun Fun Run will be rescheduled to February 22nd, same time and place. Please take advantage of this additional time to encourage others to participate and/or fundraise.

We want to keep runners safe and out of the cold, so we hope this new date works for you and it will be a beautiful day! 

Thanks for understanding and your support! If you have any questions, please email Larry Chauvin at larryachauvin@gmail.com.