Garrett the Grand - Batten Fighter

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Gilbertsville, PA
Garrett the Grand - Batten Fighter

This page has been set up to provide information about Garrett and his battle with a very rare genetic disorder called Batten Disease.

Unfortunately if you have made it to Garrett's page you have heard of the bad news. Garrett has been recently (in 2014) diagnosed with NCL (CLN1-infantile) or Batten Disease. This disease effects only 30 - 50 individuals a year in the United States and 2,000 worldwide. Within the next days, months and years Garrett will regress and will lose his speech, movement, cognitive abilities and have his life taken too early. He is currently losing vision, is almost blind and has many developmental delays. This disease will steal Garrett's body and mind but for us lucky enough to know Garrett we will always know who he is. If you see Garrett please recognize him and let him share some of the magic we receive daily. If you have questions, please ask, this is relatively therapeutic for us. Our goal is to educate and to have these rare diseases recognized. We need to get appropriate funding to end this unneeded pain for families. Keep an eye out we will be planning events which will be interesting and memorable. (This site is managed by me, Joe, I don't want Nancy to be blamed for my poor spelling and grammar).

08/08/2026

Then and now! 2017 vs 2026! Happy 2 be Home 5K 🧑‍🦼‍➡️🏃‍♂️🏃 so happy we can support an organization that has helped us!

07/13/2026

BDSRA conference 2026 - Chicago, IL
This conference brings on so many emotions. It is the group you never want to join but as soon as you do you feel safe, supported and most importantly, not alone.
This one hit especially hard since it was where we attended our first conference in 2015, soon after Garrett’s diagnosis in 2014.
We are a family of fighters. Thank you for your support so we could help sponsor this event. 💛

02/28/2026

Rare Disease Day 2026 🦓🖤🤍🖤🤍

Garrett says Hi! 👋

See you all at the Grind in Boyertown on Tuesday to support Rare Disease 💛

02/05/2026

It has been a bit but Rare Disease Day is around the corner and Garrett the Grand wants to raise some $ for Batten Disease! 🦓🖤🤍
Dine in or Take out 11am-9p on Tuesday, March 3rd at the Grind Restaurant in Boyertown🍴
Mention or show this flyer!

04/27/2025

Happy #15 Garrett!!! 🎉🎉 You are an amazing boy, always rolling with the punches. 💛 #15

02/28/2025

Rare Disease Day 2025
🦓🖤🤍🖤🤍🦓

11/01/2024

Happy Halloween! 🎃🎃👻🐸

08/26/2024

Garrett is a high schooler!!! 9th grade ❤️

07/16/2024

2024 BDSRA conference in St. Louis, MO! So glad we could make the trip. Always a wonderful yet emotional time. Thanks to our donors so we could help sponsor this event 🦓

06/09/2024

International Batten Disease Day. We continue to fight and raise awareness for Batten disease while spending the best time together… family time 💛

Address

P. O. Box 2
Gilbertsville, PA
19525

Website

https://bdsrafoundation.org/

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