|
Fund the treatment and beat Batten now
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!
|
|
ForeBatten Fund
BBDF welcomes the ForeBatten Fund to our family of supporters. The ForeBatten Fund joins the Will Herndon Research Fund and Hugs for Hudson Fund, as well as other affected families, fundraising all across the United States. By pooling resources and connecting communities we are able to expand our impact and reach to accelerate research.
|
In February 2017, the Kahn family received news that no one wants to hear. Their 7-year-old twin daughters, Amelia and Makenzie, were losing their vision due to a rare genetic disease. The diagnosis of juvenile Batten disease came with a team of doctors, a slew of support from family and friends, and a goal of finding a cure. To find out more about the ForeBatten fund click
here.
|
|
In it's 9th year, the Battlin' Batten in Baffin Fishing Tournament raised $43,000, bringing it's lifetime total to $244,000! The tournament, hosted by Neal Meinzer, takes place every spring in Baffin Bay. Thank you to all the fishermen who participated and the supporters who donated in their honor. Pictured right is the winning team, Team PlainsCapitalBank, Routt Thornhill, Harold Barrow and team captain, Paul Holubec.
|
Tiny Boxwoods Preview Dinner
The iconic Houston restaurant opened it's Austin doors prior to their grand opening for a small group of generous patrons in support of BBDF earlier this month. The dinner raised over $9,000! A great big thank you to Lance Thompson and the entire team at Tiny Boxwoods Austin.
Pictured left; Dawn and Lance Thompson.
|
|
Congratulations to the Will Herndon Research Fund at Beyond Batten Disease Foundation. Their 8th annual HOPE on the Green Golf Tournament in The Woodlands grossed
$117,539! Additionally, Ron and Darin Mittelstaedt and their RDM Positive Impact Foundation matched dollar-for-dollar every donation, bringing the event total to $235,078.
|
|
This month, Orange Theory fitness hosted a "Torture the Trainer" session benefiting BBDF. The event was organized by Jenny Bachler and raised $1,204! Big thanks to Jenny and the team at Orange Theory Fitness.
|
|
Be the Change
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.
|
Special thanks to the Fellowship of Christian Athletes (FCA) at O. Henry Middle School, who hosted a bake sale earlier this month to raise money for research. The students baked, packaged and sold snacks at the baseball fields one Saturday and raised $3,345 to fund the Be Project! We are grateful to Sheryl Jett, Anna Belle Williams, Hart Humble and Dana Kocurek who helped the kids host a successful fundraiser.
|
|
Research
BBDF has partnered with Texas Children's Hospital (TCH) to provide informational videos on the work being done at the Jan and Dan Duncan Neurological Research Institute (NRI) in Houston, TX.
In this video Dr. Marco Sardiello dives into BBDF funded research and the discovery of TFEB and it's effects on lysosomal storage diseases, including Batten disease.
|
Garland Benson,12 year old brother of Christiane Benson
, has set a goal to raise $1 million to go towards the treatment for his sister and others affected by Batten disease. His plan is to get 100,000 people to donate $10 each. To date the Be a Hero campaign has raised over $40,0000! Let's help him out by spreading the word and sharing his video!
You can donate on his
fundraising page
or you can
text HERO to 501501 to donate $10.
The team at Myriad RBM-Innovative Biomarker Solutions (pictured above with Garland) hosted a breakfast taco fundraiser to help Garland reach more friends. The group raised almost $800!
|
Jennifer McGinn is an aunt to 7 year old twins Amelia and Makenzie Kahn of the ForeBatten Fund. Jennifer recently published her first children's book and has dedicated it to Amelia and Makenzie. The book is a story of a young girl, Emily, who dreams in vivid color with the help of some very special shoes. It is about always dreaming in color and never missing a special experience.
Jennifer collaborated with a talented 12 year old illustrator, Kelly Cox, to bring Emily's dreams to life. Proceeds from the book will benefit Beyond Batten Disease Foundation. You can Purchase your copy today via Amazon Smiles to maximize your support. For every eligible purchase you make through smile.amazon.com Amazon donates .05% to your designated charity.
|
|
Upcoming Events
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.
|
During the month of June, Aloe Skin and Body is donating 20% of every massage to BBDF! To book your massage today call 512.344.9394, email
[email protected] or book online at
aloeskinandbody.com.
|
Cabo Bob's Burritos will be supporting Batten disease research on June 5th and July 3rd. Stop by any of their two locations in Austin, TX and let them know you are there for the Batten fundraiser and they will donate 10% of your purchase back to the foundation.
|
|
