Jack Bear Foundation

10/11/2026

Thanks to GeneDX for featuring us in their campaign! GeneDX is the genetics lab that analyzed our blood samples in 2016 and again in 2019, that led to connections to Dr. Stephanie Efthymiou and the study she was conducting on the Rubicon gene variance and ultimately our SCAR-15 diagnosis in 2022!🧬

"We're so grateful we began the process of genetic testing early in Jack's life. While it took years to reach a diagnosis, starting early gave us a head start in finding answers. The unknown was painful, but learning Jack's prognosis gave us comfort, direction and a patient and family community we now belong to. Most importantly, it put us in the best possible position to take action for Jack's future."

Jack Bear Foundation



https://genedx.co/4xs9LJW

09/23/2026

SHOP • SAVE • SUPPORT!

The Jack Bear Foundation Merchandise Sale is here! 🎉

From now through October 16th, get 20% OFF all Jack Bear apparel & merch! 🙌

Every purchase helps spread awareness of the Jack Bear Foundation and supports our mission to make a difference. 🧬

✨ New items have been added to the collection, too! ✨

Head over to the Jack Bear website, check out the new gear, and shop for a cause! 🧸💙
https://cloztalk.com/collections/jack-bear-foundation

09/15/2026

Still taking in what an incredible evening we had at the 2026 SCAR-15 Soirée: Research in Motion!🧬💙

We entered the night with a goal of raising $115,000 and, thanks to this extraordinary community, raised more than $163,000 and counting for SCAR-15 research!

We were especially grateful to have Dr. Erica Davis of the Stanley Manne Children’s Research Institute at Lurie Children’s and Dr. Madeline Marques of UTHealth Houston, both currently working on SCAR-15 research projects. Seeing dedicated research actively underway just 2.5 years after starting the Jack Bear Foundation is incredibly encouraging.

And Jack? He had an absolute ball and was definitely feeling all the love in the room. 💙

To everyone who supported the evening and our mission, thank you. What began with Jack’s story continues to grow into something much bigger for the SCAR-15 community!

09/11/2026

🎉 THE SOIRÉE AUCTION IS LIVE!🧸💙

We’re just 48 hours away from the SCAR-15 Soirée: Research in Motion, and you can officially start exploring this year’s auction!

Our silent auction is OPEN for bidding now, with so many amazing packages, experiences, dining, sports, getaways and more. And you can also get a sneak peek at the live auction packages we’ll be featuring Saturday night. 👀

👉 Browse, register + start bidding here: https://qtego.us/l/jackbearfoundation/r

Not joining us Saturday? You can still bid! 💙 Our silent auction is open to everyone, whether you’ll be celebrating with us in person or cheering us on from afar. Bidding closes Saturday at 7:45 p.m. CT.

A huge thank you to the businesses, families, friends and supporters who donated to this year’s auctions. We simply could not do this without your generosity and support of the Jack Bear Foundation.

Now the big question...what are you bidding on?! 👀🧸💙

09/05/2026

ONE WEEK TO GO!🧸💙🥂

We’re officially ONE WEEK away from the 2026 SCAR-15 Soirée: Research in Motion, and we can’t wait to gather with this incredible community next Saturday!

And if you’re still hoping to join us, TODAY IS THE LAST DAY to purchase tickets!🎟️
https://jackbearfoundation.home.qtego.us/

As we count down to the Soirée, we also want to give a huge THANK YOU to our incredible sponsors!✨

This evening wouldn’t be possible without the businesses, organizations, individuals and families who believe in our mission and continue to stand alongside us. Your support helps us continue advancing SCAR-15 research, and we are so grateful to have you as part of the Jack Bear community.💙🧸

08/18/2026

⚡ THE POWER COUPLE IS BACK! ⚡

Jack’s Aunt Cindy Powers & Uncle Luke Powers are returning as our guest auctioneers for the 2026 SCAR-15 Soirée: Research in Motion and if you were there last year, you know they bring the energy! 🎤🙌

Our silent and live auctions are shaping up to be pretty incredible, with unforgettable experiences, getaways, sports packages and more. We’ll start giving you a sneak peek at some of this year’s packages in the weeks ahead! 👀

But first…you’ll want a front-row seat for the fun!

🎟️ Join us Saturday, September 12 and get your tickets today: https://jackbearfoundation.home.qtego.us/

Get those paddles ready. Cindy & Luke mean business! 😉🧸💙

08/05/2026

🧬 We're excited to share our 2026 SCAR-15 Research Update!

This report highlights the three research grants currently funded by the Jack Bear Foundation and the incredible work taking place in Chicago, Houston, London, and Cologne to better understand SCAR-15 and move us closer to future treatments.

As Jack's parents, it's incredibly meaningful to see this level of collaboration around a disease that, just a few years ago, had very little dedicated research.

A special thank you to Brenna McCormick, our genetic counseling intern through the University of Pennsylvania's Orphan Disease Center Genetic Counseling Student Exchange Program, for creating this wonderful overview and helping make the science accessible to our community.

📄 Read the full Research Update here:
https://static1.squarespace.com/static/65aaef73311baf36e08d8d9b/t/6a7097432d2ead56b27e27d3/1785763651073/Jack+Bear+research+grant+newsletter+%281%29.pdf

Thank you to everyone who has supported, encouraged, and believed in our mission. We couldn't do this without you. 💙🧸

06/29/2026

🎁 Help Make Our Auction Unforgettable!

The 2026 SCAR-15 Soirée: Research in Motion is just around the corner, and we're looking for unique items and experiences for our silent and live auctions.

Do you have:
🏖️ A vacation home or getaway?
🎟️ Event or sports tickets?
🍽️ A favorite restaurant or gift card?
🛍️ Merchandise or specialty products?
🧖‍♀️ Services or one-of-a-kind experiences?

Every donation helps raise critical funds for SCAR-15 research while showcasing the incredible generosity of our community.

If you or your organization would like to donate an auction item, we'd love to hear from you! Please email [email protected].

Together, we're keeping research in motion. 🧬🧸💙

06/22/2026

🧬Become a SCAR-15 Soirée Sponsor 💙

Join us in keeping Research in Motion.

We’re seeking sponsors for the 2026 SCAR-15 Soirée, an evening dedicated to advancing research, raising awareness, and supporting families affected by this ultra-rare disease.

Sponsorship opportunities are available at a variety of levels and offer meaningful visibility while helping fund critical research initiatives and rare disease advocacy. With more than 200 guests expected, sponsors play an important role in making this event possible.

Interested in sponsoring? Contact Carrie at [email protected] or check out the sponsorship levels at: https://jackbearfoundation.home.qtego.us/

Together, we’re building momentum for what’s next! 🧸💙

06/15/2026

Tickets are now available for this year’s SCAR-15 Soiree: Research in Motion! 🧬💙

Join us on Saturday, September 12th at Chicago Highlands Club for an inspiring evening dedicated to advancing research, raising awareness, and supporting families affected by SCAR-15.

This special event brings together friends, researchers, advocates, and supporters who share a commitment to accelerating discovery and creating hope for those impacted by this ultra-rare disease.

We can’t wait to celebrate the progress being made and the momentum building within the SCAR-15 community!

📅 September 12, 2026
⏰ 6:00–9:00 PM
📍 Chicago Highlands Club

🎟️ Purchase your tickets today at: https://jackbearfoundation.home.qtego.us/