SPG4 Cure Fundraiser

12/22/2025

Who do you think will be the guest speaker at our second annual Jack's Gala fundraiser? Take a guess in the post below! 🌕✨

🌠Take a GUESS in the comments! 🌠

✨ Reaching for the Stars… with a Special Guest Speaker✨

We are excited to share that the guest speaker for Jack’s Gala has officially been confirmed. We are keeping this announcement just a little longer so that everyone can GUESS who it is! We can promise it is someone who embodies the heart, hope, and purpose behind this evening ⭐️

Take a guess and put who you think it is in the comments below! ⬇️⬇️⬇️Correct guesses will receive a direct message with a 10% discount code for their ticket to the gala ✨

Please like, comment and share this post to help us spread the word 🤩

For ticket information, to sponsor this event or to donate to our live or silent auctions:
🔵Website: https://spg4curefundraiser.wixsite.com/fundraising-event

🔵Tickets: https://www.eventbrite.ca/e/jacks-gala-reaching-for-the-stars-tickets-1846654847359

🔵Contact: jacks_gala@outlook.com

12/22/2025

12/20/2025

It was a great honour to be selected as the family supported in the first year of the Fundraiser here in Ottawa.

Thank you to our friends who organized this event, who turned their time, energy, and care into real help for our son. Yesterday they surprised us with the total and announced $24,553.77 had been raised from this event for SPG4 research and Jack’s treatment and cure!

To the Chelly committee, Marc, Chelsea, Alicia, Megan, Josie, Angelo - we are deeply grateful for your friendship, your effort, and for standing with our family in a way we’ll never forget. A very special thank you to Cinnani construction for your incredibly big hearts and generous support for this event and for Jack. A special thank you to and for your generous support for this event and your continuous support of our family. And a big thank you to every team who signed up, each player, volunteer, sponsor, and donor, and everyone who came out to cheer. You have all given us real hope that we can keep driving research forward fast enough to reach a cure for Jack!

For more on our family’s story and why we are fundraising, please see our Registered Canadian Charity:
https://blugenes.org/spg4-cure/

12/13/2025

It is moments like this that truly highlight how vital fundraising is in driving research forward. Seeing published results, with acknowledgment of our Fundraiser for Jack, reinforces the real and tangible impact of this collective effort.

We extend our deepest gratitude to everyone who has supported us and continues to help us reach for the stars. We also offer our sincere thanks and congratulations to the dedicated researchers at Drexel University and the University of Massachusetts for their exceptional work and for bringing this important research to publication. And thank you to the other fundraising families, who we are working alongside to reach this cure for our children together

Because of all of you, we are one meaningful step closer to a cure. ❤️

You can read the full article here:
https://pubmed.ncbi.nlm.nih.gov/41311060/

To learn more about our family’s story or to donate, please see our Registered Canadian Charity:
https://blugenes.org/spg4-cure/

12/10/2025

Thank You, Ice Hawks! 🤍🦅

Jack’s hockey team, the Ice Hawks, surprised us with a poinsettia fundraiser and donated the money raised to Jack’s cure. Thank you to Daniel for donating the poinsettias and for coming up with the idea, and to the whole team for participating and your support. Together they raised $370 for Jack’s cure!

Here is a very sweet video from the Ice Hawks team manager, Sharon, and her son Charlie (Jack’s teammate!) announcing the fundraiser and total.

Thank you to all of Jack’s teammates and their families for this thoughtful surprise 🧡🏒

12/06/2025

💛 Cheer for Liam! 💛

For the second year in a row, Jack’s amazing friend Liam is walking in the Stittsville Parade of Lights with his swim team, handing out candy with SPG4 Cure donation info to help Jack reach a cure.

This year, he could have driven with his hockey team and tossed candy to the crowd—but he chose to walk, hand out every piece himself, and share Jack’s cure info personally. That’s kindness, thoughtfulness, and friendship all rolled into one little boy with a huge heart. 💛
Liam, you are a true hero to Jack and to all of us.

If you see him in the parade, cheer for him as loudly as you can—he deserves every cheer!!! 🎉👏

And right beside him will be “Lemonade Stand Dad” Yan, proud swim/hockey parent, supporting him every step. A huge thank you to the entire Liu family for your incredible support!

12/02/2025

❤️This Giving Tuesday, we’re asking for your help to save our son. He is battling SPG4, a rare genetic and progressive disease with no cure yet. Every donation to our charity brings us one step closer to funding the research and treatment options he urgently needs — and you will receive a tax receipt for your gift.

Thank you for your consideraton of a donation. Your support truly means the world to our family.
-Anna and Richard❤️

Canadian Charity:
https://blugenes.org/spg4-cure/

USA Charity:
https://give.rarevillage.org/campaign/spg4-research-and-treatment-for-jack/c577364

12/01/2025

We are so excited that Ottawa’s own Tyler Kealey will be returning as musical guest for our upcoming fundraising event Jack's Gala! Thank you, Tyler! 🌟

🎶 A Heartfelt Welcome Back: Tyler Kealey Returns to Jack’s Gala! ✨

We are so excited to announce that Tyler Kealey will be joining us once again as our musical guest for Jack’s Gala: Reaching for the Stars! His warmth, talent, and genuine heart have brought something special to our event, and we can’t wait for everyone to experience his music again this year. 💫

⭐Tyler is known for his soulful vocals, lightning-fast piano work, and songs that capture the beauty in everyday moments. His performances blend folk, blues, and rock into heartfelt stories that stay with you long after the music ends. A beloved force in the Ottawa music scene, Tyler’s energy, kindness, and passion have touched audiences across Canada and around the world. From festival stages to intimate listening rooms, and through decades of songwriting, touring, teaching, and community work, Tyler continues to inspire with every note he plays.

🌠 We’re truly grateful to have Tyler back with us to help us make it a really special night!

.laidlaw

For tickets and more information:

https://spg4curefundraiser.wixsite.com/fundraising-event

11/26/2025

We are so excited that Dylan Black will be joining us as our live auctioneer for Jack's Gala on May 30th, 2026! Thank you, Dylan!

🌟 Exciting News for Jack’s Gala: Reaching for the Stars! 🌟

We are thrilled to announce that Dylan Black will be joining us as our Live Auctioneer on May 30th, 2026!💫

🎤 About Dylan Black
Hailing from Ottawa, Dylan Black has been a beloved radio personality for 27 years, known for his warm presence, quick wit, and deep commitment to community. He’s not only a trusted voice on the airwaves but also a passionate supporter of countless charitable causes. His energy, heart, and talent make him the perfect fit to lead our live auction and help elevate this year’s gala to new heights. We are so grateful to have him join us on this special night.

✨ Thank you, Dylan, for lending your voice and spirit to our mission! ✨

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🌟For more information, to become a sponsor or donor, or to purchase tickets to this event, please see our website:

https://spg4curefundraiser.wixsite.com/fundraising-event

11/19/2025

💙 A Heartfelt Thank You to Hometown Hippy!

We are deeply grateful to Hometown Hippy for her generous $400 donation toward a cure for Jack, raised through the thoughtful effort of sewing namebars onto jerseys! As a devoted hockey mom and friend, and her support brings not only hope to our family but also a reminder of the incredible community surrounding Jack.

We cannot thank you enough for this meaningful, and surprise, contribution! Thank you, Stephanie! 💙🏒✨

11/15/2025

♥️ is December 2, 2025

As many of you know, our son Jack lives with SPG4, a devastating and progressive rare genetic disease. SPG4 slowly impacts mobility, strength, and independence.

We are the only family in Canada affiliated with a Canadian charity dedicated specifically to raising funds for SPG4 research and treatment. Because SPG4 is so rare, research progress depends on families like ours fighting to keep the momentum going. We need your help.

This Giving Tuesday, we are asking our community — friends, family, neighbours, and supporters — to consider making a donation. Every single dollar helps - every single dollar goes directly toward SPG4 research and treatment initiatives that could change Jack’s future. Your support brings us closer to a cure and treatment, and a world where Jack can keep doing what he loves most: lacing up his skates and flying across the ice! 🏒

If you’re able, please consider giving today. From the bottom of our hearts, thank you for helping us save our son from SPG4♥️

——-
Donation Websites:

Canadian Charity (Canadian Tax Receipts):
https://blugenes.org/spg4-cure/

USA Charity (USA Tax Receipts):
https://give.rarevillage.org/campaign/spg4-research-and-treatment-for-jack/c577364