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 and prepare for clinical trials for juvenile Batten disease. Thank you for contributing over $4.4 million towards our goal. Join the movement and get involved with the Be Project! WATCH THE VIDEO .
BBDF 101
Next Steps to Clinical Trials
In July, BBDF sponsored the Batten Disease Support and Research Association Family Conference where we had an opportunity to update affected families on the progress of our drug development program for the combination therapy BBDF 101.

Visiting one on one with parents at the conference allowed us to share information on the next steps required by the FDA to initiate clinical trials (read more). We were also able to acknowledge the generosity and support of the BBDF community that created the opportunity for these children to receive the first ever treatment for juvenile Batten disease (read the history of BBDF 101) . On behalf of all the families we talked with, thank you for making this treatment a reality for their kids!
BE A HERO
Over $600K!
Christiane Benson's brother, Garland, launched his Be a Hero campaign last year to raise $1 million to fund a treatment for his sister. To date he has raised over $606,000! To donate $10 text HERO to 501501 or visit beahero.beyondbatten.org .
Hard at Work to Help
Rhett (age 9) and Wesley (age 6) Whitworth spent their summer pulling weeds, watering plants and walking dogs to raise money to help Garland reach his goal. Thank you to these generous young entrepreneurs who raised $2,165 for Be a Hero !
A SISTER'S STORY
Go Tyler! Beat Batten!
by Jamie Kim
My brother, Tyler, has always been the most energetic, happy little boy I have ever been around. He never runs out of things to do or things to say.

A few years ago, he started to have seizures and began to lose his vision. Around a year ago, our family found out that Tyler has juvenile Batten disease. READ THE FULL STORY
BATTEN FAMILIES MAKING A DIFFERENCE
FUNDRAISING SUCCESS
Beyond Batten Disease Foundation's strategy brings together affected families to connect communities and resources to achieve our goal. We are so grateful for our partners.
On a Mission to Bind Up Batten
The first annual Golf to Bind Up Batten took place last month in Waterville, OH and raised $10,045 in support of our partners Bind Up Batten ! Thank you for helping us to further our mission of eradicating this devastating disease through research and awareness.
The inspiration behind Bind Up batten, Charleston, is receiving support in many creative and generous ways. His Great Grandpa has decided to build bird houses to #BindUpBatten! The bird houses are selling for $20 and 100% of the proceeds will go to research! Click HERE to watch a video and to find out how to order email bindupbatten@beyondbatten.org .
Rare Sister's Day
The mountain town of Fairplay, CO is the home of Jeanna and Pete Ambrose, grandparents of Cecilia and Lily Fries, who have Batten disease. The community honored the family with Rare Sisters Day on August 18th and raised $32,626 to fund the treatment, BBDF 101!

The day included dinner and music by a local band as well as a live and silent auction. Read parents Beth and Jon's heartfelt thank you HERE . 
Chasing a Cure
Nine year old, Chase "Jasper" Peterson has not let juvenile Batten disease stop him from doing what he loves, rodeoing! Click HERE to watch Salt Lake City's FOX 13 story about Chase and his community. Since joining BBDF earlier this year, Chase the Cure has raised over $10,000 for research!
GET INVOLVED
September, 23 2018 - New Braunfels, TX
The 4th annual Family Night at Schlitterbahn Waterpark in New Braunfels, TX on Sunday, September 23rd from 2-6 pm.

Join us for another year at our exclusive private party. No Crowds! No Lines!
This year BBDF has joined forces with the Louise H. Batz Patient Safety Foundation and the event promises to be more fun than ever. Check out sponsorships and new ticket pricing HERE .
October 20, 2018 - The Woodlands, TX
Join the Will Herndon Research Fund to celebrate ten years of inspiring HOPE at the 10th annual Hope Under the Stars Gala. Registration is now open! Find out more HERE .
September 29, 2018- Duxbury, MA
Join the Curran family for the 4th annual A Cure in the Nick of Time Run/Walk benefitting BBDF! For more information and to register click HERE .
November 9, 2018- Omaha, NE
BBDF is honored to be chosen as the beneficiary for the Brain Duensing Foundation 's annual fundraiser in honor and support of the Sillman family, who received their son Drew's diagnosis of juvenile Batten disease in 2017. Registration opens August 31st. Click HERE for more information.