micheledcollins.bsky.social - Profile | ThreadSky | a Reddit-style client for Bluesky

micheledcollins.bsky.social

Founder of Hope for ULD, wife, mom, grandmother, teacher, animal lover, follower of Jesus, finding great value in truth, integrity and compassion, fighting #RareEpilepsy

13 posts 173 followers 412 following

Posts 10 Comments 12

Important words from an organization that is funding ULD/EPM1 research! # unverrichtlundborgdisease #epm1 #RareEpilepsy #genetherapy epilepsynewengland.org/news/my-stor...

submitted 3 days ago • 0 comments

Want the latest research news? Sign up to get our occasional email updates. You can subscribe at the bottom of any page on our website! Check it out! www.hopeforuld.org #epm1 #uld #unverrichtlundborgdisease #genetherapy #RareEpilepsy #hopeforuld

submitted 6 days ago • 0 comments

Dogs on the news is my new favorite thing

submitted 44 days ago • 2 comments

I've updated the starter pack for rare genetic epilepsies 🧠🧬 It is a work in progress and I will continue to update the pack over the coming weeks 🤩 go.bsky.app/NXw4e8C

submitted 98 days ago • 9 comments

The ULD/ EPM1 Natural History Study is underway! If you are a ULD (EPM1) patient family, or if you know of one, please have them contact [email protected] Join us in the race to end the suffering caused by ULD/EPM1! #epm1 #genetherapy #rareepilepsy #unverrichtlundborgdisease #uld

submitted 94 days ago • 0 comments

We are thrilled to announce that our team of researchers has just initiated a Natural History Study for ULD/EPM1! This is an amazing opportunity for ALL patients and families to help researchers better understand ULD/EPM1! More information here... www.hopeforuld.org/research

submitted 106 days ago • 0 comments

Hey #epilepsy research people doing the great migration from the other side! I've just created this starter pack with a few names that I'll update as I get feedback, so please spread the word so we can build a community! go.bsky.app/B8pPi1n

submitted 106 days ago • 17 comments

There are nearly 1,000 genes known to cause epilepsy. 800+ of them are associated with developmental and epileptic encephalopathy. #rareepilepsy #epilepsy #genetics