Parents and Rare Sisters founders Jon and Beth Fries appeared on CBS Denver on Monday, April 8, where they shared the story of their two daughters Cecilia and Lilly who are currently living with juvenile Batten disease. Jon and Beth also invited the community to participate in the inaugural Expect Miracles Rare Sisters 5K, taking place Sunday, April 28 at Lake Arbor in Arvada, Colorado—sign up or make a donation at https://beyondbatten.org/events/expect_miracles_5k/
BBDF is proud to partner with Delaney’s Dream from West Virginia and welcomes them to our family of donor advised funds. By connecting affected families and communities, we are able to pool resources and better position ourselves to increase awareness and accelerate research. Delaney lost her battle with juvenile Batten disease on Jan. 21, 2019—less than 4 years after her diagnosis—but her family and friends remain dedicated to raising awareness and finding a cure for juvenile Batten disease. We are grateful for their continued interest and desire to help families and children still living with this disease.
“This quote, ‘It’s the little things that make life BIG,’ describes Delaney perfectly”, Delaney’s mom, Janet, shares. “It didn’t take much to make Delaney happy.”
Read more to learn about Delaney and her family.
The Jackson, MI community came out in strong support of Bind Up Batten’s inaugural Batten Bash fundraising event, which raised more than $30,000! Simply incredible. With hors d’oeuvres, drinks, and a silent auction, guests enjoyed an evening of fun and giving at the historic Cascades Manor house. Thank you and congratulations to Angie Lefere for organizing and hosting such a successful fundraiser. And thank you to all the friends and generous sponsors for your support, which allows BBDF to continue leading the way in scientific research with the hope of finding treatments and a cure for juvenile Batten disease for Charleston and children like him.
There are ample opportunities during the month of April to get involved and support BBDF. Make sure to visit each event page for information on how to participate, including options for those who can’t physically be present.
- Kelly Wynne Dare to Donate | All March | Online: For the month of March, Kelly Wynne will donate 10% of all purchases of the Soco Crossbody to BBDF.
- Tiles Gone Wild! Mah Jongg Tournament | Sunday, April 1 | The Woodlands, TX
- HOPE on the Green | Monday, Aril 8 | The Woodlands, TX
- Taking a Swing at Batten | Sunday April 14 | Austin, TX
- ORS Kids Superhero Run | Saturday, April 27 | Jackson, MI
- Expect Miracles 5K | Saturday April 28, Arvada, CO
Due to the weather conditions (being at or below freezing with wind chill and moisture), the Run to the Sun Fun Run will be rescheduled to February 22nd, same time and place. Please take advantage of this additional time to encourage others to participate and/or fundraise.
We want to keep runners safe and out of the cold, so we hope this new date works for you and it will be a beautiful day!
Thanks for understanding and your support! If you have any questions, please email Larry Chauvin at [email protected].
BBDF welcomes Sofia’s Dream to our family of donor advised funds. By connecting affected families and communities, we are able to pool resources and better position ourselves to increase awareness and accelerate research. Sofia, her family and BBDF share the same dream – to find a cure and eradicate juvenile Batten disease – and together we will. We are so grateful to have Sofia’s family as part of our community.
Sofia was diagnosed with juvenile Batten disease (CLN3) in 2015, and despite her vision loss and poor memory she remains eager to explore the world alongside her family, including her twin brother, Max. Click here to learn more about Sofia.
We would like to express our deepest gratitude for your help in successfully completing the Be Project. Eleven years ago, as parents faced with a daunting diagnosis and the enormous challenge of helping our child, we simply could not have reached this important milestone without you. Your love, support and devotion to our family and mission has been overwhelming, and we are so very grateful for you and feel incredibly blessed.
In 2016, after 8 years of funding research for Batten disease, our research team was ready to take the next steps to advance our discovery of a treatment to slow the progression of Batten disease. As you know, The Be Project was launched to raise $6 million in 24 months in order to validate their findings, create patient registries, and advance a host of other necessary steps to prepare for FDA engagement and clinical trials. And, we did just that. WE DID IT!!! We achieved our goal, and we hope you feel so proud and take ownership in this enormous accomplishment!
Our initial meeting with the FDA was very positive, and they have given us a clear road map to advance from here to clinical trials. We are checking off the FDA’s “to do list” as quickly as possible and are actively pursuing a pharmaceutical partner who can provide the funding and drug development expertise we need to initiate the trial. We are so very close, and anticipate a start date some time very soon.
With much love and heartfelt gratitude from our family to yours,
Charlotte and Craig
Join Austin Youth Fitness on February 8th for the 4th Annual Run to the Sun Fun Run benefiting Beyond Batten Disease Foundation. Our goal is to increase awareness of Batten disease and raise $10,000 to support treatment research. We hope you will join us and/or support the event by creating a fundraising page, becoming a sponsor, or encouraging others to attend. Learn more.
Thank you so much for everything y’all have done for me and my family to get to my $1 million goal. On New Year’s Eve, I was a little bit worried that I wouldn’t make it to my goal, but all of sudden, when I checked my website, I was getting hundreds of donations and messages from people that I barely even knew. I was the one that got to tell my sister the news and it was the proudest moment of my life. Not only did you help Christiane but hundreds of other kids who have Batten disease will benefit from your generosity too.
Thank you so much for your kindness and support!
BBDF recently participated in an informational webinar hosted by Global Genes. Mary Beth Kiser, BBDF President and CEO, was among several panelists, including representatives from Amicus Therapeutics, Nationwide Children’s Hospital, and Batten Disease Support and Research Association (BDSRA), providing updated information on Batten disease research and family resources.
Click here to download the slides or click the video link below to watch the full webinar.