Our first Zoom call on Keto, better than we hoped!
Mike Graglia is the co-founder of SRF, his son Tony has SynGAP.
Every family is on their own journey. But quite a few seem to land in the similar places. For us it went like this:
Seizures, led to Anti-Epileptic Drugs (AEDs). AEDs led to wondering if there were any other options since the side effects were serious. Wondering what else was out there led us to Keto. Randomly, just after Keto we got a genetic diagnosis from an #Epilepsy panel (thank you Invitae!) and realized we weren’t alone. We met others who were in Keto-land. The story goes on and is currently in a decent place of our son being treated with modified Keto and CBD, but that is for another article.
Keto is complicated, but after a while many of us try it. Some of us do Modified Atkins Diet (MAD) and some do the full Keto diet, like Sarah who has an incredible blog about her efforts. Other parents and #SyngapLeaders have tried it too. So we decided to get everyone who wanted to know more together for a live chat on the SRF Zoom account.
It was better than we could have hoped.
We made a presentation and recorded the whole thing (see below); please watch it. There is more info on the SRF Knowledge Center too. But here is the surprise…
When we were preparing for the call and having 1:1 VCs to make sure everyone was ok with Zoom and when we had the actual call, people just didn’t want to sign off.
Those of us who are privileged to lead a #RareDisease organization go from call to call, Slack channel to FaceBook group, Annual Conference to scientist update to dinner with other RD leaders. Every bit of space in our life is filled with #SYNGAP discussion and planning. We’re in a constant state of connection and it can be tiring. But we are connected and it is too easy to take that for granted.
As we did this meeting and the preparation leading up to I was struck that parents — with full lives and noisy children all making themselves known in background — were fully engaged. Yes, we were talking about an important treatment option that is too often overlooked and yes, the stories are remarkable, but it was more than that. Parents from Australia to the US to the UK, who know each other from years of sharing their story asynchronously online were suddenly chatting in real time. It felt good.
We do all have multiple apps on our devices that allow for this with no planning so what’s the big deal? You try and schedule a meeting with a rare disease parent. But with call, the content was enough of an incentive to make it happen. The benefits went beyond knowledge sharing.
We’re going to do more, we want to compare notes on CBD and Sleep next. The Genetic Counselor on our SAB has has also agreed to do a discussion with parents, which is exciting. So stay tuned, #RareDisease parents have much to teach each other, and the connection is not to be underestimated. We are looking for someone to help organize these going forward if you are interested please reach out.
Thanks to all those who joined our first call and make sure to follow SRF to see what is next.
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