The Will Herndon Research Fund

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The Will Herndon Research Fund Will Herndon Fund (HOPE) is dedicated to saving Will Herndon, son of Missy & Wayne. Since 2009, we have raised over 9 million for Batten research.

Please pray for Will Herndon. Pray for healing for Will and for the researchers to find a way to eradicate Batten disease.

Thank you to Waste Connections Golf Classic for Kids benefiting multiple local charities including HOPE The Will Herndon...
08/28/2026

Thank you to Waste Connections Golf Classic for Kids benefiting multiple local charities including HOPE The Will Herndon Fund of Beyond Batten Disease Foundation (BBDF)!

This check of $100,000 supports:
- BBDF funded study supporting real world data on off-label miglustat use to treat CLN3 Batten disease
- recruiting patients worldwide to participate in the upcoming Phase III Clinical Trial

We are grateful for our incredible community who got us to this point and to our continued supporters giving to research with the hopes for eventual full
FDA approval to ensure access to all kids affected with Batten. In the shadows, the fight against the disease continues. HOPE will WIN!

03/25/2026

A couple of specific prayer requests for Will while he tackles his week at the NIH!
Jeremiah 29:11❤️
-Missy

02/28/2026

On Rare Disease Day, we stand with the children and families navigating rare conditions such as Rett syndrome, Batten disease, Angelman’s syndrome, and others. These disorders may be unusual, but for the families navigating their impact, they are no less devastating. We honor the strength, resilience and hope they show every day. 💙🧩

For more than 100 years, The Blue Bird Circle has supported pediatric neurological care, research and treatment through our partnership with Texas Children's Hospital, Baylor College of Medicine, and Texas Children’s Duncan Neurological Research Institute (NRI). Recognizing Rare Disease Day highlights why The Blue Bird Circle champions pediatric neurology research.

Did you know that the Duncan NRI is one of the five research centers The Blue Bird Circle supports? The NRI is known internationally as the center for “solving the unsolvable” because it takes on the most complex neurological disorders—especially those affecting children. Their research has opened doors to targeted therapies where none existed before. For many families, the NRI has provided a diagnosis after years of unanswered questions elsewhere, giving way to restoring function, slowing disease and giving families more clarity and hope for a brighter future for their child.

At the Duncan NRI, researchers and physicians work together to turn uncertainty into HOPE and discoveries into brighter futures for children.

Another good time with !This Friday we’ll laugh and celebrate all while supporting the fight against juvenile Batten!
12/04/2025

Another good time with !This Friday we’ll laugh and celebrate all while supporting the fight against juvenile Batten!

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The Woodlands, TX

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+17135570219

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