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.

VIEW/DOWNLOAD PHOTOS HERE

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.

Thank you for supporting BBDF in 2017!

Our first newsletter of 2018 is here and we are thrilled to announce that we have raised over $3.5 million of the $6 million we need to fund the treatment for juvenile Batten disease! We could not have done it without our family and community supporters who fundraise for us, spread awareness and connect us to other foundations. You can read the full newsletter HERE!

Austin Kids host Bake Sale for Batten!

We love our young philanthropists who branch out on their own to raise awareness and funds for BBDF! Olivia and Finley Brown, Claire and Tripp Craddick, Wyatt and Flynn Eby and Owen Strauss hosted an impromptu bake sale in their neighborhood that raised $152! Flynn and Olivia made all of the cupcakes from scratch and then Wyatt and Finley helped them sell them. The other kiddos started as customers and then stayed to help out! If you want to find out how your child can Be the Change please click HERE for more information on our kids fundraising campaign.

Austin American Statesman – Austin boy trying to raise $1 million for Batten disease treatment for sister

When his parents set out to raise $6 million in two years to fund a Food and Drug Administration clinical trial for a possible treatment for Batten disease, Garland Benson, 13, decided last March he was going to raise $1 million of that to help find a treatment for his sister, Christiane. He would do it, he decided, by asking 100,000 people to give $10. READ THE FULL STORY HERE

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