SPG4 Cure Fundraiser

11/08/2025

💙 We are beyond grateful to the wonderful Hosie & Brown Auto Parts family for their incredible ongoing support of our journey to find a cure for Jack. Through their annual golf tournament, they raised an amazing $6,371.63 to help fund research to treat and cure SPG4!

A BIG heartfelt thank-you to Stella and Sully who made Jack’s day by stopping by to personally deliver the cheque from Hosie & Brown!

To the Hosie & Brown Family - your generosity and compassion continue to lift us up and remind us that we’re not alone in this fight. Every dollar raised brings us closer to a cure. From the bottom of our hearts, thank you for being such an important part of our journey💙

11/07/2025

At the SPF Conference in Washington, D.C. this month, our family and charity were recognized by researchers for our support of their groundbreaking work toward finding a cure for SPG4. Seeing our names acknowledged in connection with such important progress was both humbling and meaningful. Knowing that our efforts are helping to drive real scientific advances that could one day help our son is what keeps us going! We’re profoundly grateful to the dedicated researchers who are pouring their expertise and passion into finding a cure for this rare disease.

To everyone who has supported our family along the way—thank you. Your generosity continues to make this research possible and brings us closer each day to a cure for SPG4.

We are grateful to be working alongside 3 other family foundations to make this happen together Cure SPG4 Foundation The Lilly and Blair Foundation Maurya Koduri Foundation with our foundation, the Blu Genes Foundation.

Drexel University
UMass Chan Medical School
University of Wisconsin-Madison
Boston Children’s Hospital

11/01/2025

🏒The 3-on-3 Charity Ball Hockey Tournament organized by the Stittsville Minor Hockey Association on Stittsville’s new Robert Grant Avenue as a part of the special “pre-opening” road celebrations, was truly an incredible display of community spirit, generosity, and teamwork.

🥅With 36 teams and nearly 200 players taking part, the event brought people together not only for a day of fun and friendly competition, but also to support local families in meaningful ways. We are profoundly humbled and deeply grateful to have been included as one of the recipient families this year! From the bottom of our hearts, we extend our sincere thanks to organizer Mike Kemp, the entire SMHA, and all of the dedicated volunteers who made this event possible. ️

🛣️A heartfelt thank-you as well to Minto, Cavanagh Construction, and Novotech for their generosity in allowing the use of the road for this special occasion.

💙Because of this community’s incredible kindness and support, $6,631 was raised toward finding a cure for Jack and our ongoing fight against SPG4. Words cannot fully express how much your support mean to us! From our family to all of you — thank you!!

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For more on Jack’s story:
https://blugenes.org/spg4-cure/

Stittsville Minor Hockey Association Papa John's Stittsville Glen Gower - Councillor / Conseiller - Stittsville Ottawa Senators Novotech Thomas Cavanagh Construction Limited Minto Homes Ottawa Mayor Mark Sutcliffe Jenna Sudds

10/24/2025

🎤❤️ Thank You for Making “Jokes for Jack” a Huge Success! ❤️🎤

We would like to extend our heartfelt gratitude to everyone who contributed to the success of the Jokes for Jack Comedy Show Fundraiser.

A sincere thank-you to Amanda and Jim for their invaluable help in organizing the event, and to Jim for serving as our outstanding host. We are also deeply appreciative of the talented performers — Simon Rakoff, who headlined the show, along with Denis Grignon and Rick Currie — for bringing their humor and energy to the stage. Your performances made the evening truly special.

Our sincere thanks also go to Absolute Comedy for providing the venue, and to every friend, neighbour, and supporter who attended and helped make this event such a success.

Because of all of you, we raised:
🎟️ Ticket sales + portion of the 50/50: $2,280.00
💌 Anonymous donation: $1,000.00
🎟️ And an extra shout-out to Mike, the 50/50 winner, who donated his $475 winnings back to Jack’s Cure — Thank you Mike for your generosity! 🙏

💥 Grand Total Raised: $3,755.00! 💥

From the bottom of our hearts — thank you! 💙

laidlaw

10/23/2025

✨ Heartfelt Thanks to Kendall ✨

We were deeply touched by an incredible act of kindness. Kendall came by and surprised us with a donation — the proceeds from the bracelets she sold — all dedicated to supporting research toward finding a cure for SPG4 to help Jack.

Kendall, your compassion, creativity, and determination shows that every act of generosity, no matter the size, has the power to make a difference. You turned your time, talent, and hard work into hope — not just for Jack, but for everyone living with SPG4.

From the bottom of our hearts, thank you! 💙

For more on Jack’s Story:
https://blugenes.org/spg4-cure/

.laidlaw

10/22/2025

🎃 We are filled with gratitude after another incredible Jack’s BOO-tacular Halloween Party Fundraiser — all thanks to the amazing people who made it possible.

First and foremost, a heartfelt thank you to Jen for organizing this event for the second year in a row, and to Maki and Willow for helping! Your time, energy, and heart go into every detail, and it means more to our family than words can express.

Thank you to every volunteer who gave their time to set up, run activities, and make the day so special — we are so thankful for your generosity.

Thank you to our dear friend Yan, a.k.a "Lemonade Stand Dad", for capturing the event for us.

We are also deeply grateful to our donors and sponsors, whose kindness and contributions made this event possible:

Papa John’s
Hosie & Brown Auto Parts
Capital Services
Cardel Homes
Little Joy’s Face Paint
Lemongrass & Lavender
Funky Candy Fluff
The Bujak-Dizzel Family (for the Canadian raffle basket)
Shoppers Drug Mart
NSK Accounting

To Jack’s and his brothers’ school friends, teammates, former daycare friends and staff, neighbours, and our entire community — thank you for continuing to show up for Jack and for our family. Your support reminds us that we’re not alone in this fight.

Because of all of you, we raised $2,590 for SPG4 research. Every dollar brings us closer to a cure — to a future where Jack doesn’t have to lose his abilities to this disease.

We are so grateful for the love, kindness, and hope you’ve all shared with us. Thank you for standing with us and helping us fight for Jack’s future. ❤️

Papa John's Stittsville Capital Services homes Glen Gower - Councillor / Conseiller - Stittsville Allan Hubley - Councillor for Kanata South Stittsville Minor Hockey Association Shoppers Drug Mart Little Joys Face Paint Funky Candy Fluff Lemongrass & Lavender

10/17/2025

🌎Today, October 17th, marks the world’s first-ever HSP and PLS Awareness Day — a day that brings awareness to two rare, progressive neurodegenerative diseases: Hereditary Spastic Paraplegia (HSP) and Primary Lateral Sclerosis (PLS).

For our family, this day holds deep, personal significance. In December 2023, our oldest son was diagnosed with HSP (Type 4), a progressive neurological disorder that causes stiffness, weakness, and a gradual loss of mobility. Since that day, our lives have been marked by a quiet, relentless grief for what this disease is trying to take from him.

There’s no cure for HSP Type 4 — yet. Every day, we fight to change our son’s future by funding the research that could lead to real treatments. If you want to be part of this fight, please consider donating. Your support brings hope and strength to families walking this difficult path.

On World HSP/PLS Day, we stand united with everyone affected by these diseases—reminding you that you are not alone, and together, we will keep fighting for awareness, support, and a cure.

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

10/05/2025