Jack Bear Foundation

03/07/2026

⛸️❄️ The Jack Bear Winter Skate is officially SOLD OUT! ❄️⛸️

We are incredibly grateful for this amazing community. Thank you to everyone who grabbed tickets and will be joining us on the ice this weekend.

If you missed out but would still like to support the Winter Skate fundraiser, you can make a donation on our website. Every gift helps move SCAR-15 research forward. 💙🧸

🔗 Donate at: https://www.zeffy.com/en-US/ticketing/2nd-annual-jack-bear-winter-skate

03/02/2026

❄️🧸 Winter Skate Perk Alert 🧸❄️

This weekend is the Jack Bear Winter Skate, and we’re excited to share that every skater will receive a Jack Bear winter hat as part of their entry!

No need to bring your own hat to stay warm. We’ve got you covered!💙

A special thank you to our local partners at for designing and creating these amazing custom hats. We are so grateful for your partnership and support in helping bring this vision to life.

⛸️ Spots are filling fast, so be sure to secure your tickets before they’re gone: https://www.zeffy.com/en-US/ticketing/2nd-annual-jack-bear-winter-skate

02/28/2026

🧬💙 Rare Disease Day 2026💙🧬
🎉The Jack Bear Foundation Turns 2!🧸

Rare Disease Day is a reminder that behind every diagnosis is a family learning, adapting, and pushing forward.

Today also marks two years since we created the Jack Bear Foundation, not because we had everything figured out, but because doing nothing wasn’t an option.

In two years, this community has grown in meaningful ways. Conversations are happening. Awareness is expanding. Support is showing up.

Yesterday we set a goal of $2,026. Because of you, we’ve already surpassed it, which we are so grateful for!

If you’ve supported, shared, encouraged, or simply followed along, thank you so much. We’re continuing the $15 for SCAR-15 campaign for the rest of the weekend!

🔗 Donate at: https://www.zeffy.com/en-US/donation-form/donate-dollar15-for-scar-15-for-rare-disease-day--2026

02/27/2026

💙🧬 Rare Disease Day 2026 🧬💙

Nine years. That’s how long it took for Jack to receive a diagnosis of SCAR-15. Not for lack of trying, but because the rare disease diagnostic journey can be long, painful, and deeply frustrating when a condition has not yet been clearly defined.

Today, we’re launching our $15 for SCAR-15 campaign because research is the reason we have answers and it’s the path to treatment. The Jack Bear Foundation is currently funding multiple research teams around the globe working to better understand this rare degenerative disorder and move us closer to real therapies.

Our goal is to raise $2,026 today. If you’re able, consider giving $15 for SCAR-15. A small gift, multiplied by many, can help create meaningful progress.

From our family to yours, thank you for standing with us. 🧸💙

🔗 Donate at: https://www.zeffy.com/en-US/donation-form/donate-dollar15-for-scar-15-for-rare-disease-day--2026

02/24/2026

They’re here… Jack bears have arrived!🧸

We are so excited to share that Jack Bear stuffed animals will be exclusively available for purchase at this year’s Jack Bear Winter Skate for $35.

As we approach Rare Disease Day and celebrate the Jack Bear Foundation’s 2nd anniversary later this week, this moment feels especially meaningful. It’s a milestone Jack and his siblings have been anxiously awaiting, and one that represents how far this community has come together.

We can’t wait to share these special bears with you on the ice. 🧸❄️

🎟️ Skate tickets are going fast and we sold out last year, so don’t wait to grab yours! https://www.zeffy.com/en-US/ticketing/2nd-annual-jack-bear-winter-skate

02/10/2026

The Jack Bear Foundation is so excited to partner with the Orphan Disease Center’s Genetic Counseling Student Exchange (GCSX) Program for the second year in a row! We are proud to introduce and welcome our student intern this year, Brenna McCormick. Over the next 10 weeks, she’ll be working on advocacy projects for the Jack Bear Foundation. Stay tuned for updates on Brenna's work!

01/30/2026

We had no idea this was coming, and then saw the Forest Hills Student Council include the Jack Bear Foundation in their Spirit Week lineup. Such a thoughtful and sweet surprise!

So grateful for these students and the kindness they continue to show Jack and our mission. 🧸💙

01/23/2026

❄️⛸️ It’s that time of year… Winter Skate season! ⛸️❄️

On one of the coldest days in years, it feels fitting to announce the Jack Bear Winter Skate! Join us on Sunday, March 8th from 4–6 PM for an afternoon of skating, community, and fun.

🎟️ Tickets are now on sale: https://www.zeffy.com/en-US/ticketing/2nd-annual-jack-bear-winter-skate

We can’t wait to skate with you! ❄️🧸💙

01/04/2026

As we get ready for today’s final Bears game of the regular season, we can’t help but think back to the special night a few weeks ago at a holiday party when our friends, the Laux family and J Jordan Homes, teamed up with the Richards family and the LoveLikeSean Foundation for a memorable and incredibly generous (Jack) Bear Squares fundraiser! That incredible act of thoughtfulness and kindness surrounding such an amazing game will stay with us for a very long time. Go Bears! 🐻

12/13/2025

Our family was honored to take part in the ribbon-cutting ceremony celebrating the extraordinary $11M Edwards Family gift that will transform genetics research at Ann & Robert H. Lurie Children's Hospital of Chicago. Jack even had the special job of holding the ribbon alongside Governor Pritzker! 🧬✂️

We were grateful to share our story with both the Chicago Tribune and NBC Chicago, reflecting on Jack’s long diagnostic odyssey and the hope this gift brings to families navigating rare disease.

This investment means the Edwards Family Division of Genetics and Rare Disease will be in a stronger position to accelerate answers, research, and innovation right here in Chicago and we are deeply appreciative to Anne & Don Edwards and to Lurie Children’s for including us in such a meaningful day.

✨ A brighter future for rare disease families like ours feels closer than ever.

📖 Chicago Tribune Coverage: https://www.chicagotribune.com/2025/12/10/lurie-childrens-hospital-genetics-donation/

🎥 NBC Chicago Clip: https://www.nbcchicago.com/video/news/local/luries-childrens-hospital-to-expand-care-for-rare-diseases-with-11m-donation/3861441/

12/07/2025

☕️❄️Hot Cocoa for a Cause This Tuesday!

The 5th Grade Gives Back Hot Cocoa Sale is happening Tuesday, December 9th from 3:30–5:30 PM right inside the Field Park School entrance and it’s OPEN TO THE PUBLIC!

This heartwarming student-led fundraiser supports the Jack Bear Foundation and helps advance research for SCAR-15, including for future McClure classmate Jack Pinkham. Every cup makes a difference. 🧸❤️

Join the 5th graders for a cozy sip of warmth and community connection. And if you can’t make it to the sale, you can still support the 5th graders’ Give Back fundraiser here:
👉 https://www.zeffy.com/en-US/donation-form/5th-grade-gives-back-hot-cocoa-sale

A huge thank-you to the Field Park 5th graders, their families, and the entire school community for their kindness, creativity, enthusiasm and support. ☕️🦅

12/04/2025

The Robinson Family shares their diagnostic odyssey to answers and ultimately treatment for two of their children facing rare disease. Their story beautifully illustrates the long, emotional, and often uncertain road so many rare disease families walk in search of clarity.

For us, it took nine years to finally receive Jack’s SCAR-15 diagnosis. Nine years of questions, therapies, appointments, and hope that someday we’d understand what he was facing.

Hearing the Robinsons share their journey so openly reminds me how powerful early genetic testing can be, and how much rapid advancements in Genetics research can change the trajectory for families like ours.

For years, the Robinson family searched for the cause of their firstborn child's seizures and developmental delays. When their third child began having simil...