Once Upon A Gene

Adapting and Collaborating to Help Bring a Cure to GSD1B with Sophie's Hope Foundation Founder and Dadvocate Jamas LaFreniere

March 3, 2022

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Adapting and Collaborating to Help Bring a Cure to GSD1B with Sophie's Hope Foundation Founder and Dadvocate Jamas LaFreniere

ONCE UPON A GENE – EPISODE 124

Adapting and Collaborating to Help Bring a Cure to GSD1B with Sophie’s Hope Foundation Founder and Dadvocate Jamas LaFreniere

Jamas LaFreniere is the rad dad to Sophie, who has an ultra-rare glycogen storage disease called GSD1B. He’s also the founder of Sophie’s Hope Foundation and CureGSD1b.

EPISODE HIGHLIGHTS

Tell us about Sophie’s diagnosis and the foundation you started.

Sophie just turned 4 years old and was diagnosed with GSD1B just before she turned 2 years old. We started Sophie’s Hope Foundation a couple months after diagnosis with the intention of leveraging our network to raise money. CureGSD1b is a patient advocacy organization which was started to bring together doctors, patients, researchers and collaborators.

How do you balance fatherhood, marriage and business?

It’s hard and there’s no way around that. My wife Margot is an incredible teammate and best advocate for Sophie. Margot takes a lot of pressure off me and I try to do the same for her and the balance works despite it being a strain.

What has been a difficult experience on your journey to raise money and awareness for GSD1B?

Making the pivot to start CureGSD1b came with a realization that I was responsible for driving a research plan, building a GSD network, collecting data and making impactful decisions. I had to acknowledge my strengths and weaknesses and remind myself that I’m doing my best to make progress.

What is your fundraising strategy?

I don’t enjoy fundraising, but the reason we’re doing it is to cure my daughter and thousands of other kids. We do an annual golf tournament, which stabilizes us financially for the year. Having a lynchpin event is important because people will get burned out if you continually ask for money. The golf tournament will likely always be our flagship event and we can add other fundraising events throughout the year.

LINKS & RESOURCES MENTIONED

Once Upon a Gene TV

https://www.thedisordercollection.com/

Courageous Parents Network

https://courageousparentsnetwork.org/

Sophie’s Hope Foundation

https://sophieshopefoundation.org/

CureGSD1b

https://curegsd1b.org/

Support Margot in the 2022 Boston Marathon

https://www.givengain.com/cc/sophieshope2022bostonmarathon/

ONCE UPON A GENE – Episode 094 – The 12 Commandments to guide you when you’re starting a rare disease patient advocacy group with Nasha Fitter and Mike Graglia