Judy and Courtney Stecker establish the Charles “Wheeler” Stecker Research Fund to join forces in raising funds for a cure after their son Wheeler was diagnosed with Batten Disease.
Lyon, 12 December 2019 – Theranexus, a biopharmaceutical company innovating in the treatment of neurological diseases and pioneer in the development of drug candidates modulating the interaction between neurons and glial cells, is pleased to announce the signing of an agreement with Beyond Batten Disease Foundation, granting it a worldwide exclusive license to develop and commercialize the drug candidate BBDF-101 for juvenile Batten disease.
Bind Up Batten brought together the community on July 20, 2019, for the 2nd Annual Batten Disease Golf Charity Outing. Over 80 golfers came out on a beautiful, cloudy day in Waterville, Ohio to raise $12,700 for juvenile Batten Disease research.
In addition to the golfers, Bind Up Batten would like to thank the families, friends, musicians, Fallen Timbers Fairways and all the sponsors who provided their support to help make this event happen.
Special thanks and recognition to Mike’s parents TJ and John Klein as well as Donna and Paul Iwinski for their incredible effort along with many other volunteers who made this day possible.
Together we can Bind Up Batten!
We Are Austin did an interview highlighting Garland Benson and the Be a Hero Campaign
Check out his interview here:
If you had a goal to raise one million dollars in two years, you might think it would be impossible! Now imagine you’re 12 years old and setting out on this incredible mission. Well, Garland Benson did just that, and his perseverance will help fund research to treat his older sister’s degenerative disease. Garland is here this morning to talk about his remarkable success raising funds for Beyond Batten.
Thanks again to everyone who helped Garland hit his goal!
BBDF is actively pursuing a pharmaceutical partner to support the clinical trial and commercialize the treatment. Donations are rolling in and every additional dollar raised by Garland’s campaign will help offset activities required by the FDA to start the trial.
People Magazine has just published an article highlighting Garland’s quest to raise a million dollars for his sister.
Thanks again to everyone who helped Garland hit his goal!
BBDF is actively pursuing a pharmaceutical partner to support the clinical trial and commercialize the treatment. Donations are rolling in and every additional dollar raised by Garland’s campaign will help offset activities required by the FDA to start the trial.
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 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.
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.
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).