Get Involved: April Fundraising Events

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. 

 

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4th Annual Run to the Sun Fun Run Rescheduled for Friday, Feb. 22, 2019

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 larryachauvin@gmail.com.

BBDF Welcomes Sophia’s Dream

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.


Thank you from the Bensons

Dear Friends,

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

We did it! Thank you from Garland

Dear Friends,

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!

Sincerely,

Garland Benson

RARE Webinar: An Educational Webinar for the Batten Disease Community

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.

Good Food, Good Times, and Good People at Honest Mary’s Fundraiser

Garland Benson was joined by family and friends as well as members of the community on Tuesday, Dec 18 for a fundraising event at Honest Mary’s. The Austin-based restaurant, which celebrates healthy eating with its menu of grain-based bowls, donated 100% of its evening profits to Garland’s Be A Hero campaign. It was a record breaking Tuesday for Honest Mary’s, and together we raised $385!

Garland Benson Shares His Story on CBS News

Garland Benson shared his story with the world last night on CBS News, calling on each of us to help put an end to Batten disease and not just save the life of his sister, Christiane, but all those living with this traumatic and fatal illness. Click the story links below and discover how this incredible young advocate and loving brother took it upon himself to raise the final $1 million of a $6 million campaign to fund an FDA approved clinical trial.

CBS News: https://www.cbsnews.com/news/beyond-batten-disease-foundation-garland-batten-christiane-batten-fundraiser-austin-texas/

Youtube: https://www.youtube.com/watch?v=WGaf7Ti-Xk4

Let’s Welcome Bianca and Her Son, Manuel, to the BBDF Community.

Bianca Vidal recently wrote to us and was kind enough to let us share her story. Let’s give her and her son a warm welcome.

“My son Manuel is a 17-year-old young man who was recently diagnosed with this terrible disease. Even though at 10 years old he started losing his vision, I never imagine it could be something else. Last year his health started to decline dramatically – it was then that a Doctor found the disease in him. He is declining faster than I thought. He can barely walk and talk now, and he does not recognize who I am most of the time. It is heartbreaking to see him like this. Even though he has good and bad days, his positive attitude is always there. And he always has a big smile for everybody and loves to show off his ‘muscles’.”

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