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⬇️

In honor of PURA Syndrome Awareness Day, we wanted to share more about this disease for those who may have never heard o...
10/23/2026

In honor of PURA Syndrome Awareness Day, we wanted to share more about this disease for those who may have never heard of the PURA gene or PURA Syndrome! We’re so grateful for the donors who make this possible; your giving is what allows us to fund this research and we’re thankful for your generosity! You can give now at the link below: https://jackstomorrow.org/

One of the most special parts of Swing for a Cure, our flagship fundraiser, was the attendance of some amazing people wh...
10/20/2026

One of the most special parts of Swing for a Cure, our flagship fundraiser, was the attendance of some amazing people who have guided our progress. Dr. Cat Lutz leads the team at The Jackson Laboratory (JAX) Rare Disease Translational Center, and is overseeing impactful PURA Syndrome research. Dr. Allyson Berent, the Chief Science Officer at the Foundation for Angelman Syndrome Therapeutics (FAST), has been a guiding light for us in the world of rare disease; we seek to emulate her in all we do. Andrew Steinsapir is a brilliant researcher who sits on our Scientific Advisory board, providing advice and guidance to help shape our strategy. Dr. Benjamin Cocanougher also serves on our Scientific Advisory Board and provides critical perspective as a physician with experience working directly with patients living with PURA Syndrome. Each of these individuals bring a rare combination of brilliance, care and humility to their work and we feel grateful to know them, work with them, and learn from them. We also want to thank Dr. Mike Boland, not pictured but no less valued, who sits on our Scientific Advisory Board and uses his experience as a Cellular & Molecular Biologist to inform our work. We'll have a pickleball court ready for you in 2027, Mike! 🤣🫡

You can learn more about all the wonderful members of our Scientific Advisory Board at the link below!
https://jackstomorrow.org/leadership-team

Jack’s diagnosis ignited a sense of deep purpose in our family; suddenly we had a child who was diagnosed with a rare di...
10/14/2026

Jack’s diagnosis ignited a sense of deep purpose in our family; suddenly we had a child who was diagnosed with a rare disease with no treatment. We knew that we wanted to set out to find and fund a treatment; not just for Jack, but for all patients living with PURA Syndrome. We've been grateful to receive messages from many families living with PURA Syndrome across the world and form friendships with them. Thanks to your donations we're able to continue funding critical PURA Syndrome research.

PURA Dads & their kiddos at Swing for a Cure 2026! So grateful to Oliver Roller, Hayden's dad, Xander Farnum, Colette's ...
10/09/2026

PURA Dads & their kiddos at Swing for a Cure 2026! So grateful to Oliver Roller, Hayden's dad, Xander Farnum, Colette's dad, and Steven Wolfe, Avery's dad for making the journey to join us!

Thanks to the generosity of our donors and sponsors, we raised more than $320,000 to advance critical PURA Syndrome rese...
10/07/2026

Thanks to the generosity of our donors and sponsors, we raised more than $320,000 to advance critical PURA Syndrome research! This was our largest and most successful fundraiser yet; we couldn't be more grateful for our attendees. If you're one of our donors, we want you to know that it's your continued support that makes the work we do - funding research to identify a treatment for PURA Syndrome - possible. It would not be happening without you.

We wanted to give another shoutout to our sponsors; they made this day possible and are a huge reason we're able to continue funding critical PURA Syndrome research! Thank you to our Putting Green Sponsors, Bloomberg Philanthropies and BTIG, our Gold Sponsor, Goldman Sachs, our Silver Sponsors, Mezzanine Distributors, Ripple, BNY, Velocity Clearing and LoveSuze, our Cocktail Sponsors, Pursuit of PURA and Brownstone, our Driving Range Sponsor, The Posner family and our Pickleball Sponsor, the Tobola family. We're also deeply grateful to each of our hole sponsors: The Kilcoyne Family, The Czepiel Family, Braunhagey and Borden LLP, The Grateful Daughter, Mark & Lesley Belkin, Colette's Corner, Michael, Jennifer and Morgan Czepiel, Chloe Jean’s Grandparents, Brian Villante and Alissa Striano, Cara Breitenbach, The Casazza & Betz Families, JMD Financial, BHS Residential Sales, The Jackson Laboratory (JAX), The Bick Family, and Sidney Weinberg & Ellen Fine-Weinberg in memoriam.

Thank you, from the bottom of our hearts, to every person who made Swing for a Cure 2026 such a success. To our incredib...
10/02/2026

Thank you, from the bottom of our hearts, to every person who made Swing for a Cure 2026 such a success. To our incredible team of volunteers, the fantastic staff at Westhampton Country Club & our sensational auctioneer Jacqueline Towers-Perkins : the day wouldn't have been what it was without your hard work & expert planning and attention to detail. To our dream team at The Jackson Laboratory (JAX) led by Cat Lutz: our progress toward a treatment for PURA Syndrome would not be possible without you. We cannot tell you how much your support and expertise means to us. Thank you to Allyson Berent, our role model in this world of rare disease research and advocacy; we admire and appreciate you so much! We're especially grateful today for our incredible board members who are so generous with their time and wisdom, and to our team who poured so much into this day. Thank you to our fellow PURA families who have given us their trust and support as we advance PURA Syndrome research; your friendship and partnership is so deeply valuable to us and it's an honor to walk this path alongside you. Finally, thank you to our generous sponsors and incredible donors who showed up and gave generously to help us find a treatment for PURA Syndrome. To say that we're humbled is an understatement. Receiving a life altering diagnosis can feel insurmountable, and the support you've shown us from day 1 is a gift we can't thank you enough for. We want you to know that we're getting closer every day to a treatment and it's all thanks to your generosity. We'll share more soon, but today we just want to say thank you to each and every one of you who made this day what it was. 🤍

We are just 2 days away from Swing for a Cure and are so humbled by the outpouring of love and support we've received in...
09/29/2026

We are just 2 days away from Swing for a Cure and are so humbled by the outpouring of love and support we've received in the busy lead up to our flagship fundraiser. Each year, we've strived to make the event even more engaging for attendees and we're thrilled with the incredible line up we have prepared this year. We still have tickets to our cocktail hour and action packed evening program available, so be sure to grab yours if you haven't yet and join us in the Hamptons on Thursday! We'd love to have you in person, but if you can't join us be sure to check out our silent auction online; bidders will be able to make offers from afar for the first time this year. 🤍 https://my.onecause.com/event/organizations/4424a294-cee7-42c3-a0cc-bf04460e8187/events/vevt:ee55fc8d-6c6b-4d42-9020-9b2323b4a09b/home/story

Swipe to see all the incredible experiences we're offering in our Swing for a Cure 2026 silent auction! From breathtakin...
09/28/2026

Swipe to see all the incredible experiences we're offering in our Swing for a Cure 2026 silent auction! From breathtaking views on exclusive golf courses to a delicious wh***ey tasting with your friends, one of these opportunities could be yours. Be sure to snag your ticket to Swing for a Cure or bid today online at the link below; bidding closes at 7 PM on October 1st !đź‘€ https://my.onecause.com/event/organizations/4424a294-cee7-42c3-a0cc-bf04460e8187/events/vevt:ee55fc8d-6c6b-4d42-9020-9b2323b4a09b/auctions/silent-auction

Not only are our research partners at The Jackson Laboratory (JAX) Rare Disease Translational Center excellent at what t...
09/25/2026

Not only are our research partners at The Jackson Laboratory (JAX) Rare Disease Translational Center excellent at what they do, they also care deeply about families like ours. Meet Matt Simon, PhD, who has been a key part of the team working on PURA Syndrome at JAX, led by the amazing Cat Lutz. If you'd like to support the research we're funding at JAX to find a treatment for PURA Syndrome, please head to the link below to grab your ticket to Swing for a Cure 2026. We still have tickets to our cocktail hour, live auction and dinner reception available and you can bid in our silent auction now at the link below. đź‘€ https://my.onecause.com/event/organizations/4424a294-cee7-42c3-a0cc-bf04460e8187/events/vevt:ee55fc8d-6c6b-4d42-9020-9b2323b4a09b/home/story

Swing for a Cure is coming up next week in the Hamptons, and you don't want to miss the evening lineup we have planned. ...
09/24/2026

Swing for a Cure is coming up next week in the Hamptons, and you don't want to miss the evening lineup we have planned. Head to the link below to grab tickets and enjoy delicious food and drinks, an energetic paddle raise, live auction with Jacqueline Towers-Perkins , a silent auction, and speeches from some of the leaders who have championed our mission of finding a treatment for PURA Syndrome from Day 1.https://jackstomorrow.org/swing-for-a-cure

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