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!


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

BBDF and the Louise H. Batz Foundation bring you Family Night 2018!

In it’s 4th year, the annual fall fundraiser, Family Night, is set for Sunday, September 23, 2018 and BBDF is excited to announce that this year’s event will be co-hosted by the Louise H. Batz Patient Safety Foundation based in San Antonio, TX. If you haven’t attended Family Night in the past, we have made quite a few changes and cannot wait for you to join us in “Splashin’ for a Passion!” For more information, including sponsorship packages and ticket information please visit beyondbatten.org/events/family-night.

Calling all Heroes!

It’s true what they say, “What starts here changes the world.” Garland has enlisted the help of hometown hero and University of Texas quarterback, Sam Ehlinger, to reach more friends so that he can help fund a treatment that could save his sister’s life! Hook ‘Em!

You can make a donation and stay up to date with Garland’s progress at beahero.beyondbatten.org OR you can text HERO to 501501 and $10 will be added to your next phone bill.

Over $70,000 raised in February!

It is an exciting time for the Foundation and our affected families as we near the possibility of a clinical trial for the first-ever treatment for juvenile Batten disease. Our February newsletter highlights a new donor advised fund, Bind Up Batten, three community fundraisers, a plethora of ways to get involved and of course your monthly update on the Be Project, which is now up to $3.7 million dollars towards our $6 million goal! You can read the full newsletter HERE!

High Schoolers Taking a Swing at Batten!

The Youth Leadership Committee hosted their first-ever fundraiser at TopGolf in Austin Texas on Sunday, February 18, 2018 and raised $9,684 for research! Special thanks to our sponsors Covert Auto Group, Jaguar Land Rover Austin, Smiles Austin, Tarrytown Pharmacy, HillCo Partners, Shannon Windham-Realtor, DeDe Church & Associates, LLC and Kasandra Keyes Photography + Design.


2018 Run to the Sun Success!

This past Sunday Austin Youth Fitness hosted the 3rd annual Run to the Sun Fun Run 5K and Kids’ K benefitting Beyond Batten Disease Foundation. What started as a cold and rainy morning turned into a wonderful event filled with fitness, family and philanthropy that raised over $8,200 for research!

VIEW/DOWNLOAD PHOTOS from the event, courtesy of Kasandra Keyes.

*Special thanks to Ballooms Austin, Kula Karate, Kasandra Keyes and the Austin Youth Fitness coaches, Allison Phillips, Cindy Samok, Dana Reyna, Brandon Batiansila, Courtney Ewing, Emily Chauvin and Larry Chauvin.

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