Yum!
25.09.2025 02:10 β π 1 π 0 π¬ 0 π 0@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
Yum!
25.09.2025 02:10 β π 1 π 0 π¬ 0 π 0If 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!
28.03.2025 01:46 β π 2 π 0 π¬ 0 π 0Rare 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
28.02.2025 21:24 β π 4 π 1 π¬ 0 π 0Important words from an organization that is funding ULD/EPM1 research! # unverrichtlundborgdisease #epm1 #RareEpilepsy #genetherapy epilepsynewengland.org/news/my-stor...
25.02.2025 02:21 β π 1 π 2 π¬ 0 π 0Want 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
22.02.2025 03:25 β π 1 π 2 π¬ 0 π 0Joni Eareckson Tada
15.01.2025 11:24 β π 0 π 0 π¬ 0 π 0Dogs on the news is my new favorite thing
14.01.2025 16:11 β π 60 π 14 π¬ 2 π 0My husband said the same thing when we watched it this year!
25.12.2024 13:04 β π 1 π 0 π¬ 0 π 0I've updated the starter pack for rare genetic epilepsies π§ π§¬
It is a work in progress and I will continue to update the pack over the coming weeks π€©
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!!
24.11.2024 16:37 β π 0 π 0 π¬ 0 π 0Cavs
21.11.2024 16:59 β π 0 π 0 π¬ 0 π 0I second this!
20.11.2024 11:16 β π 1 π 0 π¬ 0 π 0We 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
13.11.2024 20:12 β π 2 π 1 π¬ 0 π 0Hey #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
18.11.2024 01:11 β π 8 π 1 π¬ 0 π 0Thank you π
18.11.2024 14:20 β π 0 π 0 π¬ 0 π 0So very glad that you are here!
18.11.2024 11:15 β π 1 π 0 π¬ 0 π 0βDefend the vulnerable, speak the truth.β - David French
15.11.2024 00:21 β π 419 π 61 π¬ 12 π 0So grateful to be here with people who care about justice and truth. #TeamJustice #JusticeMatters
14.11.2024 03:11 β π 0 π 0 π¬ 0 π 0Very happy to be here! Brought Teddy with me to say βHiβ.
13.11.2024 11:31 β π 6 π 0 π¬ 0 π 0I am glad that you are here!!
13.11.2024 11:22 β π 0 π 0 π¬ 0 π 0I just got here, too. I think that this is a good place to be!
13.11.2024 03:17 β π 3 π 0 π¬ 0 π 0Totally agree!!
12.11.2024 17:27 β π 0 π 0 π¬ 0 π 0Teddy is here!
12.11.2024 14:46 β π 2 π 0 π¬ 0 π 0