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There could be an SCN2A family living next to us and we wouldn't know it. Someone to share battle stories with. Someone that’s close. Someone we could help, or get help from that understands.
Having something equivalent to a phonebook of SCN2A parents would be great.
I’ve often wondered why something that would seemingly be so simple, wasn’t solved for. For many of us having filled out countless surveys for several years, that information being used to build profiles of us with the hopes of understanding or drawing conclusions around the progression of our disease, and a slew of other things.
In this particular scenario though, all we're concerned about is simply knowing where other families are, so that in the circumstance that we’re close, we can get together, or contact each other directly without having to rely on other entities. Understanding where we are more locally will allow us to get together easier, in more locations, with the hopes that this will better connect us.
So with that - I’ve created an open SCN2A Global Contact Registry here. This is another form, but short and quick. You’re free to fill out as much or as little information as you wish, and all results are public to whoever wants them.
Separately, we've also created a closed, long form, HIPAA and GDPR complaint form that you can see on the right of this page, and other pages of our site. This is more detailed, and the information can be used to accelerate care based on building commonalities around mutation sets.
Again, this isn't meant to be a perfect solution, and still a work in progress, but this is apparently something of need in our community, and we're looking to help accelerate accessibility to all groups, domestic and international.
If you have feedback, please join our Facebook group here and chat with me directly, or find me on any of the social media handles that I’ve provided as the first entry in this global scn2a contact registry document.
Hoping this helps, and if you’re in Pittsburgh, Pennsylvania or Ohio, hit us up! We’d love to meet you personally.
Sincerely,
Jason
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There could be an SCN2A family living next to us and we wouldn't know it. Someone to share battle stories with. Someone that’s close. Someone we could help, or get help from that understands.
Having something equivalent to a phonebook of SCN2A parents would be great.
I’ve often wondered why something that would seemingly be so simple, wasn’t solved for. For many of us having filled out countless surveys for several years, that information being used to build profiles of us with the hopes of understanding or drawing conclusions around the progression of our disease, and a slew of other things.
In this particular scenario though, all we're concerned about is simply knowing where other families are, so that in the circumstance that we’re close, we can get together, or contact each other directly without having to rely on other entities. Understanding where we are more locally will allow us to get together easier, in more locations, with the hopes that this will better connect us.
So with that - I’ve created an open SCN2A Global Contact Registry here. This is another form, but short and quick. You’re free to fill out as much or as little information as you wish, and all results are public to whoever wants them.
Separately, we've also created a closed, long form, HIPAA and GDPR complaint form that you can see on the right of this page, and other pages of our site. This is more detailed, and the information can be used to accelerate care based on building commonalities around mutation sets.
Again, this isn't meant to be a perfect solution, and still a work in progress, but this is apparently something of need in our community, and we're looking to help accelerate accessibility to all groups, domestic and international.
If you have feedback, please join our Facebook group here and chat with me directly, or find me on any of the social media handles that I’ve provided as the first entry in this global scn2a contact registry document.
Hoping this helps, and if you’re in Pittsburgh, Pennsylvania or Ohio, hit us up! We’d love to meet you personally.
Sincerely,
Jason
Vlad Magdalin
