Jack's Thousand Days

05/22/2026

🌊🦈 CALLING ALL LOCAL VENDORS! 🦈🌊

Jack’s Thousand Days Foundation is looking for amazing local vendors to join us for our **2nd Annual Jack’s 1,000 Days of Play** on **June 20** in Van Alstyne!

This family-friendly community event will feature:
🎶 Live music
🍔 Food trucks
❄️ Snowcones
🐐 Petting zoo
💦 Splash pad & water slides
🎉 And tons of fun for families across North Texas!

We’d love to partner with vendors from Van Alstyne and surrounding communities including McKinney, Anna, Melissa, Sherman, Denison, Celina, Prosper, and beyond!

If you’re interested in becoming a vendor, we’d love to hear from you:
📧 Email us at [[email protected]](mailto:[email protected])
📱 Send us a message on Facebook or Instagram
🌐 Or reach out through the contact form on our website: [Jack’s Thousand Days Foundation](https://www.jacksthousanddays.org/contact)

Come be part of a meaningful day supporting families and communities impacted by childhood disease while connecting with hundreds of local families. 💙

05/13/2026

This is our friend Eli that has a diagnosis of hydrocephalus that he is NOT letting define him. Here’s a message from mom to one of our board members on what this little cutie has been up to:

“He’s literally the happiest kid I know. Now that he knows he can stand for small bits of time, it’s almost a pain to get him to sit down hahaha. Thank you 100x for connecting us with JTD. It covered a whole year and a half of physical therapy for him that our insurance wouldn’t approve.”

Thank you to our donors for making moments like this possible. You are helping families in ways you can’t imagine.

05/13/2026

HOORAY FOR TEAM CHIP!!!!

We got a letter today, which prompted a call to the neurologist’s office. Turns out, the external review was denied, meaning we were essentially out of options aside from hiring an attorney.

However, four days later, that decision was OVERTURNED.

Yes, God OPENED that once-closed door!

What this means now is that we have coverage for his medication for 12 months at $250/month. After that coverage period ends, we will go back to paying out-of-pocket and fighting the insurance all over again for a new coverage period... a cycle that will continue every year until this drug is FDA approved to treat Batten Disease, specifically. So, please understand, if you see fundraisers in the future, that’s why. We don’t know how long we will have to play this game or how much the medicine will cost each year, but we can’t afford to have any interruptions in his treatment. Right now, this is the only shot we have at slowing down the progression of this awful disease.

This whole diagnosis in general has been extremely difficult to carry around everyday. We’re usually “okay” and can smile through it for Chip’s sake, but some days are better than others. We are tired but we will never stop fighting for him. I’m so proud of that, but I’m also incredibly humbled and grateful that God continues to open doors for us, even if they were closed just four days before.

We want to thank every single one of you that have donated to us, prayed for us, checked on us, and loved on Chip a little extra over the last few months. The support has been above and beyond anything we could’ve ever imagined. Even total strangers from opposing teams have cheered him on at his baseball games. It’s amazing to see how his story is impacting the hearts of people we don’t even know. I just know God has something really special planned for him and I’m thankful you all are here to watch it unfold with us.

04/20/2026

Mark your calendars!

Jack’s Thousand Days is hosting its annual KIDS EVENT you won’t want to miss 💙

June 20th at the Central Social District, come cool down with us, have fun, and walk away with some prizes.

We’re bringing the community together for a fun, meaningful day supporting kids and families facing a childhood diagnosis, and we want YOU to be part of it!

Calling all Sponsors and Young Entrepreneurs:
Get your business in front of local families while supporting an incredible cause. Have a small business, craft, or idea? We’d LOVE to have you join us and showcase what you’ve got!

Interested in sponsoring or participating?
Send us a message or email us to get involved! [email protected]

Let’s make this something special 🦈💙
Option to pre-purchase tickets coming soon!

04/14/2026

Read below to support Chip!!!

03/13/2026

Uncle DJ is back at it again with another half IronMan in Jack's Honor.

03/05/2026

Because of your donations, moments like this are possible. 🩵

02/28/2026

Every. Day.

Today and every day, we recognize, stand with, and advocate for the over 300,000,000 people worldwide living with a rare disease, especially our loved ones with Batten disease. This Rare Disease Day, we encourage you to get involved in any way you can – volunteering, donating, advocating, learning about our programs, or even shopping. A little of anything you can do goes a long way for the Batten disease community:https://ow.ly/5WWF50YmCPs

Thank you to everyone who participated in the Panda Express fundraiser on Friday, and thank you for your support of the Batten disease community and BDSRA. Your support benefits our mission to support Batten families of all CLN types, fund and facilitate research, and advocate for treatments and a cure. Together, we are Batten Advocates for a Cure.

Rare Disease Day

02/19/2026

February is Rare Disease Month, and for our family, this month is deeply personal.

Rare diseases may be uncommon, but their impact is enormous. Families face complex diagnoses, limited resources, and a long road that often feels isolating. That’s why awareness matters. Advocacy matters. Community matters.

This month, and always, we stand with rare disease families and honor the children whose lives changed everything.

01/13/2026

TONIGHT AT 7 PM CENTRAL

Tune into The Sportsman Channel to watch Night Crew and the spectacular video they did of the gala to support Jack’s Mission of helping families everywhere that are affected by childhood disease.

This channel is available on Dish and DirecTV

🩵💙🩶🖤🤍