What started with a generous $5,000 donation soon grew into a live give-a-thon during the BDSRA Annual Family Conference’s banquet celebration in Cleveland with one goal in mind — securing funds for the hiring of the Vice President of Research position at the BDSRA Foundation.

Dr. David Pearce, President of Innovation Research & World Clinic at Sanford Health and a BDSRA Board Member, provided the lead gift of $5,000. Not long after, Wayne Kiefer and Larry Killen asked to lead the Text-to-Give campaign to help fund the VP of Research position.

What followed was a barrage of incoming donations and interruptions of the music blasting throughout the ballroom and dancing to update those in attendance on the amount of money being raised and what it was for.

“I was overwhelmed by the spontaneous support,” President & CEO Amy Fenton Parker said. “To me, it was affirmation that our community has complete buy-in for the vision set forth by the strategic plan.”

Donations were given in cash, checks, credit cards through the website and text-to-give. Donors also secured company matches and funding for their volunteer hours, while Drew’s Hope, a non-profit foundation established in 2007 by Board Member Tony Ferrandino and his wife, Kate, in honor of their late son, Drew Ferrandino, committed to giving $10,000 per year for three years.

Overall, it is estimated that more than $42,000 was raised, including pledges.

“This funding will give us a great start to the reinvigoration of our Research program,” Parker added. “Now that COVID is winding down and labs are working again, we hope to see a VP of Research leading grantmaking. More funding is always appreciated for both, and I am so grateful to everyone at the conference who contributed and the initiative of Wayne and Larry to make it happen.”

The BDSRA Foundation would like to express its gratitude to everyone who donated to this cause. Without you, we couldn’t do our part to support, fund and facilitate research, and advocate for a cure for the Batten community.

Donations are still being accepted and plans for the research position will be announced later this fall.

BDSRA Foundation exists to provide, support, research, and advocacy for families with all forms of Batten disease. Please consider investing monthly in our vision of a world without Batten by clicking this link and selecting the “Recurring” button.

Together, we are Batten Advocates for a Cure.