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(L-R) Cate & George Vreeland and their friend Eliza Pittman
"Every $100 makes a diference!" - SRF BOD Chair, Suzanne Jones, aunt to Cate and George
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February 25, 2024
Issue #37
Dear Family, Friends, and Partners of SRF,
Every issue, every social post, every podcast talks about spreading awareness, raising money, signing up for studies, keeping the momentum going until we find a cure for SYNGAP1. As Rare Disease Day approaches, it's heartwarming to see siblings, relatives, and friends get involved and give their energy toward these goals.
Cate Vreeland gets it - cousin to Jansen Jones, she organized a bake sale and donated 100% of the profits in a town without a known Syngapian!
Shanaye Worth gets it - sister to Syngapian Addison, she is still doing the 2023 Hodgeman County Miss Teen Pageant, using her platform to talk about SYNGAP1! (Watch her amazing speech here!)
Paulina Polanco gets it - caregiver and sister to twins Libby and Espy, Paulina attends conferences, writes blogs, produces Café SYNGAP1, and was the most recent guest on SYNGAP1 Stories!
Others get it too, in ways both big and small. We need their help - we need everyone's help. Living with SYNGAP1 is so difficult, and the road to a cure is long. Involvement is imperative if we are to succeed in as little time possible.
With that in mind, how are you doing on your 2024 resolution checklist? It's not to late to start your efforts for the year...
...for our kids - all of our kids,
Ed Gabler
Cole's Bapa & SRF Newsletter Coordinator
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Get Ready to Sprint!
Are you one of the 9 teams registered yet? Mark your calendars for April 27, 2024 and sign up today at Syngap.Fund/Sprint24!
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Let's Ride!
The SRF team is taking shape for this year's 10th annual Million Dollar Bike Ride (MDBR). Last year, we had 23 cyclists from 7 states participate. Contact Aaron Harding (aaron@curesyngap1.org) if you're interested in joining the team!
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BE PREPARED!
These studies will lead to trials in the foreseeable future! Mike explained this in Orlando - watch here!
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Speaking of Studies...
...if you are the immediate family or caregiver of someone living with epilepsy and plan to attend an accredited, US-based institution, our friends at UCB are offering 30 scholarships up to $5,000 and 3 more up to $10,000. Learn more here!
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Spread the Word!
February 29 is Rare Disease Day. Why is this important? Although we live with SYNGAP1 every day, the vast majority of people have never heard of it, nor do they understand what our lives are like. We try to make others aware 24/7, but it's especially important to amplify our voices in unison every February. Take inspiration in these examples:
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We have often discussed under-representation of patients of color with SYNGAP1. The Peterson Family shares their struggles with Q City Metro. Disparities in healthcare are noted - we must urge medical professionals to do better for our underserved community! No family should feel dismissed ... no patient should be without a diagnosis! Read the piece here. Ethan's Warrior Story can be found here.
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Jansen Jones is one of two children with a rare disease featured in an article from Children's Healthcare of Atlanta (CHOA). Read more here. Jansen's Warrior Story can be found here.
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Celia and the Postigo family's journey to a diagnosis at age 17 is documented by EL PAÍS here. Celia's Warrior Story can be found here.
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We should all amplify the messages from Orlando Family Day summarized by Paulina in this blog. Share with your extended families. Let them hear the raw emotions, the hope from our community's leaders, and see why we need their help in so many ways. Syngap.Fund/FD23.
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Sydney Stelmaszek (pictured) and Sandy Smith represented SRF to spread awareness of SYNGAP1 in South Africa at Rare-X Rare Disease Conference. Thank you both!
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It's not too late to show your colors! Need some tips? Find them here.
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Support Yourself & SYNGAP1 Siblings!
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