Beyond Batten Funded Research Professor Awarded

Congratulations to Marco Sardiello, Ph.D. Assistant Professor Molecular &Human Genetics Department, Baylor College of Medicine and BBDF-funded researcher on winning the 2019 Michael E. DeBakey M.D. Award for Research Excellence.  Dr. Sardiello is being recognized for his exemplary work in Batten disease.

We are grateful to his dedication to our families and are thrilled that he has been recognized with this prominent award.

Well done and well deserved!

Rare Sisters Hosts First-Ever Expect Miracles 5K

Rare Sisters brought together a community of over 1,000 supporters on Sunday, April 28 for the fund’s first-ever Expect Miracles 5K. Participants were treated to a beautiful Colorado Spring day at Lake Arbor in Arvada, where runners and families enjoyed a whole host of outdoor activities as well as a crowdsourced art project and local vendor fair. The event raised nearly $40,000 to support juvenile Batten disease research, advancing us closer to a clinical trial and viable treatment. Thank you to all the runners (present and virtual), supporters, sponsors, and volunteers who came together to make the first annual Expect Miracles 5K a tremendous success. Special thanks and recognition to Beth Fries, mother and co-founder of Rare Sisters, who organized the Expect Miracles 5k and inspired good among so many.

Austin Takes a Swing at Batten

Blue skies, sunshine, and near-perfect temperatures provided the ideal setting for the BBDF Youth Leadership Committee’s (YLC) second annual Taking a Swing at Batten golf tournament. On Sunday, April 14, YLC members, together with friends, family, and local supporters, teed up at Topgolf Austin to help raise nearly $9,000 to support Batten disease research. Thank you to everyone came out and took a BIG swing at Batten and to our generous sponsors: Amicus Therapeutics, Wadsworth Golf Charities, Fosforus, Jenna Rose, Elle McCartt, Carson Kurad, and Jackson Hanson. Special thanks to President Carson Kurad, President-Elect Elle McCartt, and Member-At-Large Grace Meinzer for their hard work organizing this event.

Battlin’ Batten in Baffin Fishing Tournament Exceeds $400,000 in Total Donations!

Friends and supporters of Beyond Batten Disease Foundation gathered on Sunday, April 7 for the 11th annual Battlin’ Batten in Baffin Fishing Tournament in Baffin, TX. The event raised more than $65,000 to support Batten disease research, bringing the event’s 11-year fundraising total to more than $400,000. Thank you to Neal Meinzer, who hosted the incredibly successful event, J. McCartt, the MVP of fundraising, and to all the fishermen and supporters who donated on their behalf. We also wish to congratulate this year’s winning team, the Trout Snobs (pictured above, left to right: Len Wright, Ken Adolph, Jim Arnold, and Kelly Dwyer).

Jon and Beth Fries Share Their Family’s Story on CBS Denver

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 Welcomes Delaney’s Dream

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.

Inaugural Batten Bash is a Great Success!

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.

 

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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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

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