24-month campaign to raise $6 million to fund the treatment for juvenile Batten disease The Be Project is Beyond Batten Disease Foundation's campaign to raise $6 million to fund the treatment for juvenile Batten disease. Thank you for contributing over $3.7 million towards our goal. Join the movement and get involved with the Be Project! WATCH THE VIDEO .

NEW FAMILY FUND Bind Up Batten We welcome Bind Up Batten to BBDF's family of funds. Affected families working together can pool resources and connect communities to expand our impact and accelerate research to accomplish our collective goals. Other funds include include the Will Herndon Research Fund, Hugs for Hudson, and Tyler's Mission .

Meet the Kleins "We thought nothing bad could ever happen to us again, simply because nothing is as heartbreaking as the death of one’s own child." Six years after unexpectedly losing their three year old, Max, to an unrelated condition, Jo and Mike Klein learned the devastating news that their second oldest son, Charleston, has juvenile Batten disease. Learn more about the Klein family by visiting bindupbatten.org . RECENT PRESS 13ABC Ohio- Family fights for awareness after son is diagnosed with an incurable disease

RESEARCH UPDATE Family Meeting at NRI For the first time in foundation history, affected families from all over the world gathered at the Jan and Dan Duncan Neurological Research Institute at Texas Children's Hospital. The families were able to meet the research team, tour the lab and learn more about BBDF projects. Additionally, the foundation brought in outside experts and researchers to share information about other treatment options on the horizon. "It meant the world to me to be surrounded by such positive and motivated people. I am just in awe of Beyond Batten and all of your collaborators. You have given us such real hope." Family Attendee

FUNDRAISING SUCCESS Beyond Batten Disease Foundation's strategy brings together our donors and other affected families to connect communities and resources to achieve our goal. We are so grateful for our family and community partners. If you are interested in hosting your own fundraiser email [email protected] or call us at 512.275.2600 . Every dollar gets us one step closer to finding a cure!

Taking it to the Green A Batten dad took to the green to help fund the treatment for juvenile Batten disease, raising over $10,000 for research. Robert Price, father of Elijah, with the support of Cleveland Draft House, hosted a golf tournament at Reedy Creek Golf Course in Four Oaks, NC. We are so grateful to Cleveland Draft House, Robert and all who participated and sponsored this event.

Taking a Swing at Batten The Youth Leadership Committee, comprised of 150 students from 11 Austin-area high schools, hosted their first-ever fundraiser at TopGolf on Sunday, February 18, 2018 and raised $9,684 for research! VIEW/DOWNLOAD PHOTOS Special thanks to sponsors of the event: 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.

Run to the Sun Fun Run  Austin Youth Fitness (AYF) hosted the 3rd annual Run to the Sun Fun Run 5K and Kids' K benefitting BBDF. Over 50 runners participated and raised over $8,200 for research! VIEW/DOWNLOAD PHOTOS Special thanks to Emily and Larry Chauvin, AYF Coaches: Allison Phillips, Cindy Samok, Dana Reyna, Kim and Brandon Batiansila and Courtney Ewing, Ballooms Austin, Kula Karate and Kasandra Keyes Photography + Design.

BE THE CHANGE Warming up the Neighborhood Hank Watson and Van Agnew hosted a lemonade stand in their neighborhood. As the temperatures dropped the boys switched gears and offered hot chocolate instead! A smart move that raised over $60 for research. Thanks to all who host bake sales and lemonade stands to raise money for research!

GET INVOLVED Amplify Austin Day March 1st at 6pm - March 2 at 6pm Austin's annual day of giving is here and it ends tonight at 6pm. This year we are highlighting Garland's Be a Hero campaign and his $150K matching challenge in order to double the impact of this 24 hour window of philanthropy! WATCH HIS VIDEO HERE You can access the fundraiser at amplifyatx.ilivehereigivehere.org/beaherotoday . Share this link with friends, family and social communities!

Hope on the Green April 9, 2018 - The Woodlands, TX Registration is now open for the 9th annual Hope on the Green Golf Tournament, benefitting the Will Herndon Research Fund. Register today at beyondbatten.org/events/hope-on-the-green/