Thank you! I love hearing your interviews with Julie Mason. In this time in which every day brings more upsetting stories about our country than we previously thought possible, you are both so refeshing to hear. God bless you!
Yum!
If you're going to read 1 newspaper article this week, I suggest this one.
"Since World War II, US research funding has led to discoveries that fueled economic gains. Now cutbacks are seen as putting that legacy in jeopardy."
By @bencasselman.bsky.social
www.nytimes.com/2025/03/31/b... #econsky
This awesome account is worth a follow, whether you are in Cleveland or not!
Rare Disease Day--there are more rares than you can imagine!
Hope for ULD is celebrating Rare Disease Day by raising awareness for our fight against the ultra rare EPM1, Unverricht-Lundborg Disease. We are working to end the suffering of ULD! #rarediseaseday #epm1 #unverrichtlundborgdisease #genetherapy #RareEpilepsy
Important words from an organization that is funding ULD/EPM1 research! # unverrichtlundborgdisease #epm1 #RareEpilepsy #genetherapy epilepsynewengland.org/news/my-stor...
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
Joni Eareckson Tada
Dogs on the news is my new favorite thing
My husband said the same thing when we watched it this year!
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
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 Joshua.Rong@childrens.harvard.edu
Join us in the race to end the suffering caused by ULD/EPM1! #epm1 #genetherapy #rareepilepsy #unverrichtlundborgdisease #uld
I am so glad that you are here!!
Cavs
I second this!
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
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
There are nearly 1,000 genes known to cause epilepsy. 800+ of them are associated with developmental and epileptic encephalopathy. #rareepilepsy #epilepsy #genetics
Thank you 😊
So very glad that you are here!
“Defend the vulnerable, speak the truth.” - David French
So grateful to be here with people who care about justice and truth. #TeamJustice #JusticeMatters
Very happy to be here! Brought Teddy with me to say “Hi”.
I am glad that you are here!!
I just got here, too. I think that this is a good place to be!
Totally agree!!
Teddy is here!
