International Star Registry Canada is honored to be part of this special event to help raise funds for the SPG4 cure.

Jack’s Story

We are Richard and Anna from Ottawa, Canada. We gave birth to a beautiful baby boy in 2017 named Jack. There are no words to describe the love and joy you feel when you hold your child for the first time and become parents for the first time. It was one of the happiest and most memorable days of our lives. Our little boy has grown up and is now 7 years old. He is kind, funny, happy, smart, empathetic, considerate, caring, sweet, loving, respectful and hard-working. He now has two little brothers, Scott and Tom, and takes his role of big brother seriously – he cares for them, protects them, watches out for them and makes them (and us all) laugh. Jack has a heart of gold and a bright light that shines within him. It is an absolute pleasure to be his parents. We are so very proud of him.

Our world turned upside down in December of 2023 when Jack was diagnosed with a rare genetic disease called Hereditary Spastic Paraplegia Type 4 (SPG4) that currently has no cure or treatment. It is a progressive disease, and this diagnosis means he is slowly becoming paralyzed over time due to neuron degeneration in his brain. Researchers are developing a treatment and cure to SPG4, but this requires funding to continue. We are urgently trying to fund this treatment and cure to human clinical trials, so we can give this cure to our son before he becomes paralyzed.

More on Jack’s Story:

• • Our fundraising video: https://youtu.be/NyeQ07YwU2w?si=PxsuTH40phWWHr1Fà

• • Our Canadian charity website (The Blu Genes Foundation – SPG4 Cure): https://blugenes.org/spg4-cure/

• • Our public social media pages: SPG4 Cure Fundraiser (Facebook), @spg4curefundraiser (Instagram), @spg4cure (X)

We are hosting a fundraiser in Ottawa in May called “Jack’s Gala: Reaching for the Stars” since Jack wants to be an astronaut and the first person to walk on Mars (website: https://spg4curefundraiser.wixsite.com/fundraising-event). In keeping with this theme, the International Star Registry is helping our family by donating a portion of every star package sold to our SPG4 Cure Fundraiser. This means that each star purchased from “Jack’s Story” will go directly towards helping us save our son from the debilitating effects of SPG4. A cure for our son means a cure for everyone affected by SPG4.

Thank you for your consideration,

With heartfelt gratitude,

Anna and Richard (Jack’s Mom and Dad)

Items available for a limited time to help raise funds

for the SPG4 cure.