The Be Project is Beyond Batten Disease Foundation's 24 month campaign to raise $6 million to fund the treatment discovered by BBDF funded research. In order to reach our goal, we have broadened the scope of our campaign to maximize our fundraising efforts including multiple ways to be involved. Join the movement and get involved with the Be Project!
Our kids fundraising initiative was created to engage children in philanthropy. Share your activities with us via social media using the hashtags #BeyondBattenDiseaseFoundation #BBDF #BeProject #WhoWillYouBe #BetheChange. Visit the website to learn more.
Lemonade Stand Takeover
This month, the elementary students of Hyde Park Baptist Schools in Austin, TX were given Be the Change jars and challenged to use their creativity to FUNdraise on their own. They hosted three different lemonade stands in February alone!
Pictured right are 2nd graders
Jacqueline Jordan and Elena Snyder serving up some lemonade. In two hours the girls raised almost $100 for research!
Profit Share Partners
A huge thank you to our friends at Hat Creek Burger Co. and Pluckers Wing Bar for teaming up with BBDF last Sunday in honor of Rare Disease Day, donating 10% of their sales!
Hat Creek generously designated 3 locations and Pluckers 2 locations, for a profit share benefitting our Be the Change initiative. Participating locations for Hat Creek included, Westlake, Burnet, and Georgetown. The Pluckers locations included Research and South Lamar.
If you would like to organize a profit share for BBDF email us at
[email protected].
Beyond Batten in the News
BBDF is very proud of the research we have funded over the last 8 years. We are especially honored to have worked with Drs. Marco Sardiello, Michela Palmieri and their colleagues at Baylor College of Medicine and the Jan and Dan Duncan Neurological Research Institute (NRI) at Texas Children's Hospital. These researchers are devoted to helping patients with Batten disease and are vital partners in our efforts. Their work was recently published in a top scientific journal, Nature Communications.
Every dollar counts. Make a financial commitment to the campaign or pledge an annual, quarterly or monthly gift.
Did You Know?
95% of rare diseases do not have a single FDA approved drug treatment. The Be Project is our chance to make a difference. Please consider making a donation to the Be Project to fund the treatment for juvenile Batten disease.
The 2017 Theme for Rare Disease Day is Research!
Share our story on social media and tell people how your support of BBDF is changing the face of rare disease!
Upcoming Fundraisers
BBDF's advocates are active in communities everywhere. By tapping into their talents and passions they are integrating Batten disease awareness into events year round. To start your own community fundraiser contact the BBDF office or click HERE to start a fundraising page.
Bustin' Clays for Batten
Join Austin's Automotive Specialists on March 4th
for a morning of Sporting Clays and a Flurry Contest. This shoot will be held in Dripping Springs, TX at the private shooting facility, Hog Heaven. Breakfast and lunch are included with your registration. REGISTER HERE
There will be great prizes, a raffle and a silent auction. Contact Jamey Whitlock for more info at [email protected].
Run to the Sun One-Miler
Join Austin Youth Fitness on April 1st for the 2nd annual Run to the Sun Fun Run! The event will take place at Camp Mabry in Austin, TX. Visit the webpage for the schedule of events. REGISTER HERE
Save the Date for Bob Schneider at the Belmont
Mark your calendars for the BBDF Development Board's live music event on Friday, March 24th at the Belmont in downtown Austin.
Sponsorship packages and tickets coming soon.
Hope on the Green
Join the Will Herndon Research Fund for the 8th annual Hope on the Green Charity Golf Tournament on Monday, April 10th. This year's tournament will take place at The Woodlands Country Club on the Palmer Course. REGISTER HERE
