“Beyond Batten Disease Foundation was the first resource I sought out after Will’s diagnosis. They had a smart approach to finding a cure and were our best hope for Will. Wayne and I are raising three kids so we didn’t have the time or the desire to manage a foundation and comply with so many rules and regulations. We wanted to put all our efforts into raising money and finding a cure as quickly as possible. Our partnership with BBDF has been very positive and I am confident in the research we are choosing to fund.”

-Missy Herndon

When Missy and Wayne Herndon received the diagnosis for their son Will, they reacted just like the Bensons and set out to raise money to cure his disease. They chose to join Beyond Batten Disease Foundation and created a fund in Will’s name, rather than expending precious time and resources to establish a new foundation. By creating a fund, the Herndons were immediately able to focus their energies on fundraising.

With the help of our Principal Scientist, we are able to make informed decisions about research projects that have the highest likelihood of becoming therapies. When you create a fund through BBDF, you will be offered a menu of projects that are in line with our goals of driving research to treatments and a cure and can determine which ones you would like to support.

Because Batten disease is so rare and underfunded, it is critical that we pool every available resource to raise awareness and dollars for research. By creating a fund, the foundation takes on the administrative functions of the nonprofit efforts and leaves you free to tap into your community of friends and family to join the fight against Batten disease. In a race against time to save the lives of children, every person and every dollar makes a difference.

To learn more about creating a fund, please fill out the form below.

Or you can contact Mary Beth Kiser, President and CEO, at (512) 275-2600 or mbkiser@beyondbatten.org.

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