Home 726 Draft — Jack's Tomorrow

SWING FOR A CURE

Thursday October 1, 2026
A day on the greens to fund research to find a cure for PURA Syndrome

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IN CONVERSATION WITH EXPERTS

Jack’s Tomorrow sits down with Alexander Farnum to discuss his work in the field rare disease research, as member of our SAB, and as a father to Colette, his daughter who lives with PURA Syndrome.

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ASGCT 2026

If there was one overarching feeling from this year's conference, it was momentum — and we felt it everywhere.

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TOOLS WITH A MISSION

Jack’s Tomorrow cofounder Kyle Czepiel joins the JAX Rare Disease Translational Center to explore the urgent need for innovative models and highlight JAX’s development of iPSC lines to advance understanding of PURA syndrome and enable drug discovery.

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Stay in the Know about the latest PURA Syndrome research

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Our Mission

to fund research to develop a treatment—and ultimately a cure—for PURA Syndrome.

The PURA Community Gains Momentum at ASGCT 2026!

What is PURA Syndrome?

PURA syndrome is a rare genetic disorder caused by mutations
in the PURA gene

Tools for Researchers

We partner with leading institutions to provide researchers with reliable tools for studying PURA Syndrome

Get Caught Up

Read the latest news and information about the work we do to find and fund a cure for PURA Syndrome

Get Involved! Host an event, volunteer, become a sponsor. You can make an impact

Latest News

PURA Community Update

Watch Our Presentation

Pioneering a New Safety Roadmap

Tools with a Mission

Listen to the Podcast

Join the Conversation

Winter break 2025 💙 📚 @easthamptonlibrary

Merry Christmas! ❤️🎄❤️ There is so much to be thankful for this holiday season!

💙 Our Scientific Advisory Board helps guide the research that advances Jack’s Tomorrow’s mission.

Andrew Steinsapir, member of our Scientific Advisory Board and Gene Therapy Expert, highlights the impact of the resources we’ve dev

💡 Science Made Simple: PURA Syndrome Edition

Ever wonder what terms in our posts like iPSC cells, mouse model, or antisense oligonucleotides (ASOs) mean? We’ve put together a glossary of key terms — from PURA protein to antisense oligon

This Giving Tuesday, help us turn hope into reality 💙

2024 has been our most exciting year yet. What started as just a plan is now becoming science:

🔬 We have a mouse model with strong phenotype ✓
🧬 iPSC lines are created for global research ✓

Understanding PURA Syndrome starts with the basics, and awareness is the first step toward finding a treatment, and ultimately, a cure. 💙

Help us find a cure! ⛳💛 Join us for Swing for a Cure on Thursday, October 1st, 2026 at Westhampton Country Club as we raise funds to help find a cure for PURA Syndrome.

This year, we raised $250,000 for PURA Syndrome research and we hope to surpass

A heartfelt thank-you to Greg Lambert and Elizabeth Lucy for hosting “Tate-a-Palooza,” a fundraiser held in honor of their son Tate who was diagnosed with PURA Syndrome in 2023, that raised $10,000 for Jack’s Tomorrow! 🧬 💛 🎉

The

🌟 2x votes today for Colette! Raise Awareness for Rare Disease! 🌟

Colette is a quarter-finalist for Baby of the Year, and voting to keep her in the competition ends TOMORROW at 7 pm PST.

We recently spent time with Colette at our annual golf ou

What an amazing day! You helped make this year’s Swing for a Cure our best year yet!

Your generosity has been truly extraordinary. Together, we raised more for PURA Syndrome research this year than ever before—raising $250,000, surpassin

We first connected with Colette’s family when her grandfather reached out to us through our website. Colette, who had just been diagnosed with PURA Syndrome, was still in the NICU. We immediately set up a Zoom call with Xander and Kim to see ho

A beautiful afternoon 💙🍁💙

What a year it has been at Jack’s Tomorrow! 🎉💙 We started this journey inspired by our sweet Jack, and now it’s grown into something so much bigger—a movement full of love, hope, and community.

This is about building a future whe

🎉 A huge THANK YOU to our incredible Swing for a Cure sponsors! 🎉
Your support means the world to us and directly fuels progress in PURA Syndrome research. Because of you, our community can come together for pickleball, celebration, and impact.

⚡

💙 Just 1 week until Swing for a Cure!

Join us for pickleball, community, and a cause—every step brings us closer to a treatment for PURA Syndrome.

🤝 Volunteer on September 25th!
🎾 Join our pickleball clinic!
👉 Sign up today: JacksTomo

Since Jack’s diagnosis in 2019, the number of known patients with PURA Syndrome has grown from 250 to 780 worldwide. This rise isn’t just numbers—it reflects an increase in the accessibility of genetic testing.

Learn more about PUR

🏌️ VOLUNTEERS NEEDED! 🏌️

Join us for SWING FOR A CURE - Our biggest fundraiser of the year!

📅 September 25th 📍 Westhampton Country Club

We need YOUR help to make this incredible event a success! Every volunteer makes a difference as we work

🏌️&zwj;♂️🏓 **SWING FOR A CURE** 🏓🏌️&zwj;♀️
*September 25th*

Join us for an incredible day of golf and pickleball, all for an amazing cause! 💙

🎟️ **Pickleball tickets still available!** Don’t miss your chance to serve up some fun while s