ONCE UPON A GENE - EPISODE 163

How Far We've Come - A Look at the FOXG1 Research and Family Conference with Rare Mama and Co Founder Nicole Johnson

FOXG1 Research Foundation Co-Founder and rare mom, Nicole Johnson, shares takeaways from the November FOXG1 Syndrome Science Symposium & Parents Conference. 

EPISODE HIGHLIGHTS

Can you tell us about your daughter Josie and about starting the FOXG1 Foundation?

Josie is 11 years old and she is the cutest little girl. She's amazing in that she has FOXG1 syndrome and can't do much, and yet she's the happiest, most joyful little girl and I feel blessed to have her in my world. My mission is to give Josie and every child with FOXG1 syndrome the healthy life they deserve. On the diagnostic journey, I was blogging and that's how I met Nasha Fitter after her daughter was diagnosed. We teamed up with other FOXG1 parents across the world and formed the FOXG1 Research Foundation in 2017. 

What were your top highlights and takeaways from the FOXG1 Syndrome Science Symposium & Parents Conference?

We hosted two conferences in one and the first was a science symposium where scientists from all over the world met privately in Florida to present their data. I couldn't believe how much science was underway. Seeing how far we've come on the science-front was really incredible, as was the promising data that was uncovered. It was clear that this isn't a job for the scientists involved-- they are invested in helping all children with FOXG1 to live a life without suffering. The parent's conference was a blend of clinicians, scientists and FOXG1 parents that all came together to learn from each other-- to connect, learn and inspire. There was a lot of information and a lot of inspiration.

What advice do you have for patient advocacy leaders in motivating their caregiver and patient population to better understand their disease, get involved and participate in fundraising?

There's a lot we want to say to parents to communicate the work that's being done to improve their children's lives, but it's a challenge because people see things quickly and go on about their day. My best advice is to let the work speak for you. For anyone starting or running a patient organization, it is hard to reach your whole community and convince your whole community to get involved, but the more work you do, the more parents will see the work that's being done. 

What advice do you have for advocacy leaders who want to hold a conference?

If you're thinking about doing it, absolutely do it. We were able to get sponsors which allowed us to do a travel scholarship and that helped parents to come, removing the burden of cost. When we were deciding on a venue, we looked at where the majority of the families lived and chose a place that doubled as a vacation. I recommend choosing a vacation-type location that adds an extra level of enjoyment. 

LINKS & RESOURCES MENTIONED

What is FOXG1 Syndrome? FOXG1 Foundation https://foxg1research.org/foxg1syndrome

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

https://effieparks.com/podcast/episode-094-mike-and-nasha

ONCE UPON A GENE - EPISODE 047 - Ciitizen - Take Control of Your Own Medical Records and Advance Research with Nasha Fitter

https://effieparks.com/podcast/episode-47-ciitizen-nasha-fitter

Ciitizen

https://www.ciitizen.com/

Josie's Journey Blog

https://josiedevin.blogspot.com/

Pam Skillman

https://foxg1research.org/resources

Nikki McIntosh

https://raremamas.com/

Dr. Allyson Berent

https://cureangelman.org/about-fast

Race to 100K

https://foxg1research.kindful.com/foxg1-awareness-2022

FOXG1 Research Foundation YouTube

https://www.youtube.com/@FOXG1Research/videos

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