Austin Takes a Swing at Batten

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.

Battlin’ Batten in Baffin Fishing Tournament Exceeds $400,000 in Total Donations!

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. 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).

Jon and Beth Fries Share Their Family’s Story on CBS Denver

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/

Inaugural Batten Bash is a Great Success!

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.

 

Get Involved: April Fundraising Events

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. 

 

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4th Annual Run to the Sun Fun Run Rescheduled for Friday, Feb. 22, 2019

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.

We did it! Thank you from Garland

Dear Friends,

Thank you so much for everything y’all have done for me and my family to get to my $1 million goal. On New Year’s Eve, I was a little bit worried that I wouldn’t make it to my goal, but all of sudden, when I checked my website, I was getting hundreds of donations and messages from people that I barely even knew. I was the one that got to tell my sister the news and it was the proudest moment of my life. Not only did you help Christiane but hundreds of other kids who have Batten disease will benefit from your generosity too.

Thank you so much for your kindness and support!

Sincerely,

Garland Benson

Good Food, Good Times, and Good People at Honest Mary’s Fundraiser

Garland Benson was joined by family and friends as well as members of the community on Tuesday, Dec 18 for a fundraising event at Honest Mary’s. The Austin-based restaurant, which celebrates healthy eating with its menu of grain-based bowls, donated 100% of its evening profits to Garland’s Be A Hero campaign. It was a record breaking Tuesday for Honest Mary’s, and together we raised $385!

June Update – Only 6 months to go!


Only 6 months until we wrap up our first ever capital campaign to fund the treatment for juvenile Batten disease. Time is of the essence as we still need almost $2 million to reach our $6 million dollar goal but with fundraisers on the calendar and help from our generous supporters we know we can do it! Take a look at our June highlights from last month’s newsletter! READ MORE

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