Jack's Tomorrow

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Jack's Tomorrow

Help us find a treatment for PURA Syndrome

🥰Nonprofit working to cure PURA Syndrome and dedicated to Jack- the hardest working little guy we know
👀Learn more, get involved, or make your donation today⬇️

04/24/2026

The stories of the siblings of those living with PURA Syndrome are so impactful. When you’re not impacted daily by a rare disease, it can be easy to believe that only a small number of people are impacted by something as rare as PURA Syndrome, with a little over 800 known cases worldwide. However, that misconception doesn’t take into account the vast family and friend networks being impacted, as well as all the people who don’t yet know their loved one has PURA Syndrome. 💞 We’re so grateful to our children for spreading the word and showing our community the irreplaceable power of sibling bonds. ⁠
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04/21/2026

We’re thrilled to announce that tickets for our Swing For A Cure Fundraiser this October are now LIVE! We cannot wait to enjoy a day of golf, pickleball, good food and drink and both live and silent auctions with you. ⭐ Availability is limited, so if you’re hoping to attend be sure to grab your ticket today at the link below!

https://jackstomorrow.org/swing-for-a-cure

04/16/2026

It takes a village, and ours is extraordinary. 💛 Jack's therapists, leading researchers, and an incredible community of supporters make this work possible. As we head into Q2, if you're in a position to donate, your gift goes directly toward funding the research that matters for Jack and every family affected by PURA Syndrome! We’re so thankful for your continued support.

04/14/2026

We wanted to share a few more of the sweet faces in our PURA Syndrome community today! We’re so thankful to be connected with both Hayden and Dalton’s families and look forward to continue connecting with other families affected by PURA Syndrome. 🧬 💙

04/09/2026

We feel incredibly lucky to have such an amazing network of parents to look up to as we work towards a cure for PURA Syndrome, and Dr. Allyson Berent has been one of our greatest role models on our journey! We have such immense respect for her approach and the approach of Foundation for Angelman Syndrome Therapeutics (FAST).

Be sure to check out FAST’s amazing work below!

https://cureangelman.org/bios/allyson-berent-weisse

04/07/2026

We’re thrilled to introduce Xander, our friend and board member who brings so much expertise to our foundation. We’re so thankful for Xander’s wisdom and comradery on our journey toward a treatment for PURA Syndrome!

04/03/2026

So proud of our eldest son, Sid, for using his voice to advocate for the importance of community on Jack’s journey so far. 💗 Your support and shares mean so much to us and we feel very lucky to have you in our corner! ⁠
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03/26/2026

We are excited to announce that on October 1st, we will be hosting a golf outing in support of critical PURA Syndrome research. Be sure to mark your calendars and join us on October 1st at the Westhampton Country Club for great golf, pickleball, food, drinks, and company.⛳ 🧬

This event is an opportunity to meet some of the incredible minds (and hearts) working to find a cure for PURA Syndrome. As parents to a child living with PURA Syndrome, this event is very close to our hearts, and we look forward to spending time with the donors, volunteers, researchers, and other rare families who understand our mission and generously help fund critical PURA Syndrome research. 💚

03/24/2026

Sharing some recent moments between our eldest, Sid, and our youngest, Jack. 💙 ⁠

Jack's Tomorrow is funding research to identify a treatment for PURA Syndrome. ⁠

You can donate now at the link in our bio to help us find a treatment and ultimately a cure for PURA Syndrome.
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03/19/2026

Thank you to everyone who was able to join us on our webinar with . 🧬 Here’s a clip of our co-founder, Kyle, explaining the need we have for more researchers invested in PURA Syndrome. We’re so grateful for the opportunity to share such a candid conversation with the brilliant Konstantinos Vanezis of The JAX Rare Disease Translational Center. A huge thank you to the phenomenal team at JAX led by Cat Lutz including Matt Simon, Vincent Pons, Katelyn Tracey for all of the work they’re doing to help identify a treatment for PURA Syndrome. ⁠
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03/17/2026

Today, we are proud to highlight one of the dedicated members of our board at Jack’s Tomorrow. Adam is an incredible support to our community who brings a genuine commitment to teamwork to our mission to find a cure for PURA Syndrome.

Adam’s blend of fintech and traditional finance experience brings a unique perspective to Jack’s Tomorrow, and his contributions continue to support our work.

Feel free to join us in sharing some kind words of appreciation to Adam and all our amazing board members in the comments!

You can learn more about the leadership team that helps guide our work to fund research into treatments and a cure for PURA Syndrome at the link below.

https://jackstomorrow.org/leadership-team

03/12/2026

The journey towards understanding PURA Syndrome and advancing research towards potential treatments begins with a mouse model. Here’s a breakdown of what that process looks like.

Our PURA knockout and conditional mouse models give researchers a way to see how changes to the PURA Syndrome gene affect development and cellular function. This important characterization lays the foundation for future research and therapeutic testing. Findings from potential treatment evaluations help researchers understand how these therapies might work in the human body. Our sincere thanks go out to The Jackson Laboratoryfor developing these models and the Yale School of Medicine for working to characterize them. 😊

Finding a treatment for Jack and all patients living with PURA Syndrome begins in the lab with these mouse models. Each phase of the process plays an essential role in driving research. You can help support this life changing research for those with PURA Syndrome by donating at the link below.

https://jackstomorrow.org/donate

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New York, NY

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https://www.jackstomorrow.org/, https://jackstomorrow.org/science

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