Give me six hours to chop down a tree and I will spend the first four sharpening the axe.
- Abraham Lincoln
Dear Friend of SRF,
Praxis, a rare disease biotech with a $2B market cap, announced they are launching a natural history study for SCN2A with Ciitizen this morning.
Aside from being big news for our friends in the SCN2A community, it is a strong endorsement of the Ciitizen platform. SRF was the first rare disease group to partner with Ciitizen ensuring this best in class platform is available to our community. JR & Virginie both strongly encouraged every family to join. Only last month, Mike made the point that when a company has a potential drug they need a natural history study to inform trial design--and if good data isn’t in place then they will have to start one. And a $2B biotech just did exactly that, with Ciitizen.
When they or another biotech has a treatment for SYNGAP, they won’t have to start a study. It is happening right now. If you are a US family who has not yet signed up, you are welcome Ciitizen.com/SYNGAP1. International families can join in April.
In other news, the #TeamSRF has events planned for this Friday and next week, we also have two exceptional webinars coming up and some helpful reading on ABA. Read up and join us--there's so much work to do. Volunteer &/or donate now.
Time is brain,
Tony's Dad & Managing Director of SRF