In 2023, we encouraged our Batten community to choose and share their one word – the one that tells the story of their Batten Journey. What they shared has been so powerful, each word filled with purpose and truth.

Over the last year, these words fueled our passion for Advocacy. They powered us through the downturns and strengthened us as we supported our community with grants to offset their financial hardships and programming like the Annual Family Conference. We hired a Science Officer, created a new Family Register, and kicked off a comprehensive Center of Excellence program that will help guide standards of care, grant funding, and collaboration among stakeholders in the community. Grants and gifts enabled us to travel far and wide for our families, from San Diego to Germany, sharing their words and stories with researchers, clinicians, and legislators. We put your funds to work.

We are seeing the progress your gifts have brought to fruition in the early days of 2024! The first board meeting is around the corner, the first Ask-An-Expert is in the works, and our first Family Party is on February 14. Soon, I will travel to the WORLD Symposium to hear about the latest research in lysosomal storage, and then I will travel to Washington D.C. for my first in-person Rare Disease Week. We are eager to share our learnings with you.

We have great plans for this year: sharing your stories through meetings with the FDA and industry partners; hosting the Annual Family Conference in St. Louis; and opening the invitation for Research Grant Applications. We will continue to serve families in need of assistance or joy, and we will advocate at every level of government and invite you to join us along the way.

Each member of our community has a word for their Batten journey. That word might change along the way, but each one of them has meaning to us. These words guide our work and help us tell each unique story.

Your donations are powerful; they propel our progress. My word is Gratitude. Thank you for investing in the mission of the BDSRA Foundation.

With Gratitude,

Amy Fenton Parker

President & CEO

P.S. If you haven’t made your 2023 Annual Appeal donation, you can get an early start on our 2024 Annual Appeal by donating here.