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 million towards our goal. Join the movement and get involved with the Be Project! WATCH THE VIDEO .
NEW FAMILY FUND
Rare Sisters
The Fries family from Colorado has established Rare Sisters and joined BBDF's family of funds. We are grateful for their partnership. Affected families working together can pool resources and connect communities to expand our impact and accelerate research to accomplish our collective goals. Find out more about the sisters at beyondbatten.org/rare-sisters.
RESEARCH
FDA Meeting Update
Last month BBDF had its first meeting with the FDA to get input and direction on our plan for clinical trials. This meeting was a huge milestone and an important first step in the process to develop BBDF's drug combination for the treatment of juvenile Batten disease. (Pictured right: key opinion leaders and BBDF team at the FDA)
 
We are happy to report that the FDA gave very positive feedback and it was clear they want to help us reach our goal. To put it into context, our regulatory consultants reported that they had never attended a meeting where the FDA was so interactive, motivated and engaged. The FDA guidelines provide a clear path forward for our program and do include some action items for us to address which will help set us up for success when we submit the final package. BBDF, our consultants and advisors are rolling up our sleeves and getting to work in order to get these Batten kids treated as quickly as possible!
BE A HERO
Over halfway there!
Christiane Benson's brother, Garland, launched his Be a Hero campaign last year to raise $1 million to fund a treatment for his sister. Since the last time we reported, the amount has almost doubled to over $566,000! Because of your generosity, we have fulfilled all of the $150,000 match from the Starlight fund. Thank you! Every donation, text and share gets Garland one step closer to his goal, so keep spreading the word! Text HERO to 501501 or visit beahero.beyondbatten.org .
Casis Penny Wars
Spearheaded by Development Board member, Larry Chauvin, the students at Casis Elementary competed in a fundraising competition and raised $4,910 for the Be a Hero campaign! Thank you Larry and thank you to all of the Casis students, staff and parents who supported this effort.
Brothers for Batten Garage Sale
Brother's for Batten, a group of Garland's 7th grade classmates, hosted a neighborhood garage sale to help him get one step closer to his $1 million goal. With the help of their friends, family and community they were able to raise over $6,000! Thank you to these young philanthropists and everyone who made this event such a success. Watch Garland's thank you video to the right!
Girl Scout Heroes
"We think what you are doing for your sister is absolutely amazing! It takes lots of courage and empathy..." In true Girl Scout fashion Troop 1647 of St. Andrew's Episcopal school banded together to help Garland and donated $500 to his campaign! Thank you to all of these young ladies who are living up to the girl scout motto.
Great Clips Giving Back
BBDF supporter and Austin Franchisee, Bill Davenport, has joined forces with Garland to promote Be a Hero at all of his salons in the Austin area! Bill sent a special invitation to other franchisees in his and other markets to garner their support as well. The local effort is one Bill believes will connect franchisees and customers alike.  “The customers of the Austin market for Great Clips have generous hearts. I’m glad other franchisees will help me bring this awesome cause to their attention."
FUNDRAISING SUCCESS
Beyond Batten Disease Foundation's strategy brings together donors and other affected families to connect communities and resources to achieve our goal. We are so grateful for our partners. If you are interested in hosting your own fundraiser email info@beyondbatten.org or call us at 512.275.2600 .
Battlin' Batten in Baffin
Hosted by BBDF Development Board member, Neal Meinzer, the 10th annual Battlin' Batten in Baffin Fishing Tournament, took place in April and secured a $50,000 match for this year's tournament, making the 10 year event total $340,000!

Pictured right is the largest trout prize winner caught by fisherman Clay Morgan, member of Paul Holubec's PlainsCapitalBank team. Thank you to Neal and to everyone who has made this fundraiser a success year after year.
St. Patrick's
Bind Up Batten supporter and Charleston's grandmother, Cathy Tippenhauer, hosted a church fundraiser at her local parish in Grand Rapids, OH and raised over $5,000 for research.  Thank you to our partners in Michigan and Ohio for your amazing generosity! Find out more about the Klein family and Bind Up Batten at bindupbatten.org .
Birthday Bash for Batten
Kate Votava and Craig Hamilton of Chicago asked for donations in lieu of birthday gifts and raised $1,300 for research! Kate has known Jo Klein of Bind Up Batten since the 8th grade. Two other high school friends (pictured right with Jo) made the trip to Chicago so that they could participate in the celebration and support the Kleins.
Rare Sisters Celebrate a Birthday
Supporters of Rare Sisters donated in honor of of Lilly's 7th birthday and raised over $600 for research! Lilly and her older sister Cecilia were diagnosed with Batten disease in January 2018 and have since joined forces with BBDF. For more information about the sisters please visit beyondbatten.org/rare-sisters.
Deyfying Gravity
Long time family partner, Joe Sikorra, has published a book and graciously pledged a percentage of every sale to BBDF. This moving story shows how a family found joy after their hopes and dreams were shattered by the diagnosis of Batten disease for their two sons. What initially seemed to be a tragedy for the Sikorra family became a story of human triumph. The book is available in hardcopy and for Kindle HERE .
GET INVOLVED
September, 23 2018 - New Braunfels, TX
Join BBDF and the Louise H. Batz Patient Safety Foundation for the 4th annual Family Night fundraiser at Schlitterbahn Waterpark in New Braunfels. This year we have reduced individual ticket prices and added new sponsorship options. We are excited to join forces with the Batz Foundation to grow this event. Save $25 from now through June 22 by using code: EB2018 at checkout. For more information and to register please click HERE .
July 28, 2018 - Seville, OH
Join Bind Up Batten for a day of camping, swimming and lake fun! For more information email bindupbatten@beyondbatten.org or purchase tickets HERE.
August 18, 2018 - Fairplay, CO
The Sillman family has partnered with the Brian Duensing Foundation and named BBDF as the beneficiary for their annual fundraiser that will take place in November. For more information click HERE .