The Will Herndon Research Fund

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.

12/04/2025

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

11/18/2025

Big things happening in the world of Batten! - Missy

We’re excited to announce that we’ve been awarded an $8.17M NIH grant to lead a new 14-site Batten Disease Clinical Research Consortium — the first of its kind in the U.S.

This national alliance will accelerate treatment development for children with Batten diseases, led by Dr. Erika Augustine and our Batten Disease Center of Excellence.

Together, we’re advancing progress for children and families affected by these rare disorders.

08/31/2025

Thank you to Waste Connections Golf Classic for Kids benefiting multiple local charities including HOPE The Will Herndon Fund of Beyond Batten Disease Foundation! This check of $100,000 covered the cost of 6 weeks of the Miglustat, the clinical trial medication for the Phase I/Phase II Patients Expanded Access Program which directly benefits Will Herndon💙💚

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!

03/30/2025

This situation started last Sunday evening. After a wonderful day of church and reflection on our week prior at the NIH and feeling optimistic and extra HOPEFUL, juvenile Batten found a way to remind us it is still very much present. This disease lurks in the shadows of our daily life and I truly believe, just when I feel like we are a step ahead mentally, it rises up. It attempts to steal our light, turn our anxiety on overdrive and remind us of the darkness that we battle every single day. Last Sunday, Will had an episode while sleeping where he appeared to be completely unresponsive, eyes rolled back, no movement and no breath we could see. After sheer panic, yelling and shaking, he appeared to just come out of the episode. Traumatized doesn’t begin to describe the moment nor the aftermath of feelings we’ve worked through this week. Thankfully Will had a very normal week, but in an effort to find answers and hopefully to figure out “what” last Sunday was… he has been in a fully monitored 48 hour EEG since Friday afternoon. This Will of ours is a Champ. An absolute rockstar of resiliency and grit. This is living with rare disease. The ups and downs of living with a progressive, degenerative disease that is trying to takeover a person, one cell at time. I thank God he was not on his stomach last Sunday sleeping, I am thankful I checked on him when I did, I am thankful for a strong faith and a heart full of HOPE, and our strong but mighty boys and husband who are able to handle the twists, turns and complexities of rare disease and the uncertainties that come with it. We have just 3 hours left! We would be grateful for a prayer for answers today for our Will💚💙 Missy Kemp Herndon

03/17/2025

Today is Day 1 of Will’s Annual visit to the National Institutes of Health (NIH) for the natural history study of CLN3 Juvenile Batten disease. We hope Will’s contributions to the next generation of kids diagnosed continues to be the opportunity for his research team to learn more about the condition, commonalities among those diagnosed, progression paths all to possible avenues that may lead to future research and treatment possibilities.
The trip is hard for many reasons. We have many appointments daily testing every major system of his body. The toughest emotionally is the reality that things have changed since our last visit, and so much since our first.

Over the years as I’ve gotten older, we realize that each day is a gift; quality of life is a gift… the simple things are the big things.

As they say, you have lots of issues until you have a health issue… then you have one issue. Truer words have not been spoken. And when it is your child…. It’s everything.

Batten has given us a unique perspective in the 16 years of living with its devastating impact. Will continues to amaze us every single day. My hope is he shows the researchers how resilient a child with this disease can be, the difference attitude, faith and HOPE can make on an entire family living with a terminal disease.

We ask your prayers as we get through the week, specifically regarding his brain and spinal fluid tests, measuring brain cell loss.
Our heart of hearts believes in the Jeremiah 29:11 and that is where we leave this post. ❤️🙏

Love, Missy & Wayne

02/28/2025

Today is Rare Disease Day
In honor of our Will I ask you take a moment today to pray for every adult and child living with a rare disease like Batten Disease.
Yesterday I met with a wonderful pastor at our church, and as we closed, she asked a simple question, “How can I pray for Will?”
Will has a lot of long-term permanent challenges, due to vision and brain cell loss; but, beautifully, his spirit is strong and HE is resilient. We are so blessed that his clinical trial meds have slowed his progression to what appears to be a crawl… So my prayer for our Will is that he continues to hold strong onto the perfect little cells that make Will, WILL. This is a tough journey, but Will’s joy is our fuel. So I pray those little neuropathways continue to find a way to stay strong keeping our Will laughing, talking, walking and joyful. And for all kids with Batten, we pray for the next phase of the Trial to obtain FDA approval for Access to All so we can bring HOPE to all with Batten Disease💚💙 - Missy

02/06/2025

Happiest of Birthdays to our Will. Words cannot express the love and admiration we have for you. Will, you continue to defy the odds, with the most precious God-given personality. Resilient doesn’t even seem strong enough a word to represent your journey. Here you still stand at 22 years old, just as strong and joyful than we could have ever imagined or hoped for. You were handed a death sentence at 6 years old, Juvenile Batten disease. And while it has stolen so much from you, you live with your perfectly imperfect body and mind, waking up each morning with the most beautiful attitude and living each day to the fullest extent of your ability. Never a complaint, just spreading your infectious laugh and love for all.
Will Herndon, you are a gift to all you encounter and are meant for a much greater purpose than we could ever imagine. Cheers to another year of staying strong, stable, and inspiring every person you meet my sweet boy! - Missy

12/12/2024

It was a beautiful day for the HOPE on The Green Golf Tournament supporting juvenile Batten Disease research and celebrating our miracle boy, Will! A huge thank you to all of our sponsors, golfers, incredible volunteers, donors and restaurant partners who continue to show up in support since the inception of this tournament in 2010! We raised nearly $95,000! A huge thank you to the team at The Woodlands Country Club Palmer Club! It takes a village, and we are grateful for our amazing, caring community who continues to believe in HOPE!

12/12/2024