Michele Collins
@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!
"Verdict from my mother, whose birthday I made it for: it tastes just like Hawaii!" nyti.ms/3W2SG99
September 25, 2025 at 2:10 AM
Yum!
Reposted by Michele Collins
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
"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
Trump Science Funding Cuts May Hurt Economy, Experts Say
Since World War II, U.S. research funding has led to discoveries that fueled economic gains. Now cutbacks are seen as putting that legacy in jeopardy.
www.nytimes.com
March 31, 2025 at 11:29 PM
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
"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!
new track on our great lake greatest hits album 🔊
March 28, 2025 at 1:46 AM
This awesome account is worth a follow, whether you are in Cleveland or not!
Reposted by Michele Collins
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
February 28, 2025 at 9:24 PM
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
Reposted by Michele Collins
Important words from an organization that is funding ULD/EPM1 research! # unverrichtlundborgdisease #epm1 #RareEpilepsy #genetherapy epilepsynewengland.org/news/my-stor...
My Story: How Funding Cuts Will Change This Researcher’s Life with Epilepsy | Epilepsy Foundation New England
Draconian cuts in NIH funding will have a lasting impact on clinical care. The National Institutes of Health (NIH), has announced dramatic cuts to all research funding that will dismantle biomedical r...
epilepsynewengland.org
February 25, 2025 at 2:21 AM
Important words from an organization that is funding ULD/EPM1 research! # unverrichtlundborgdisease #epm1 #RareEpilepsy #genetherapy epilepsynewengland.org/news/my-stor...
Reposted by Michele Collins
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
Unverricht-Lundborg Disease | Hope for ULD | 501(c)(3) nonprofit
Hope for ULD is a nonprofit that raises funds for gene therapy research to treat Unverricht-Lundborg Disease (ULD), a heritable, degenerative myoclonus epilepsy.
www.hopeforuld.org
February 22, 2025 at 3:25 AM
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
Reposted by Michele Collins
Dogs on the news is my new favorite thing
January 14, 2025 at 4:11 PM
Dogs on the news is my new favorite thing
Reposted by Michele Collins
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
It is a work in progress and I will continue to update the pack over the coming weeks 🤩
go.bsky.app/NXw4e8C
November 21, 2024 at 9:10 PM
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
It is a work in progress and I will continue to update the pack over the coming weeks 🤩
go.bsky.app/NXw4e8C
Reposted by Michele Collins
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
Join us in the race to end the suffering caused by ULD/EPM1! #epm1 #genetherapy #rareepilepsy #unverrichtlundborgdisease #uld
November 25, 2024 at 7:41 PM
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
Join us in the race to end the suffering caused by ULD/EPM1! #epm1 #genetherapy #rareepilepsy #unverrichtlundborgdisease #uld
Reposted by Michele Collins
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
Research | mysite
www.hopeforuld.org
November 13, 2024 at 8:12 PM
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
Reposted by Michele Collins
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
go.bsky.app/B8pPi1n
November 13, 2024 at 10:21 PM
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
go.bsky.app/B8pPi1n
Reposted by Michele Collins
There are nearly 1,000 genes known to cause epilepsy. 800+ of them are associated with developmental and epileptic encephalopathy. #rareepilepsy #epilepsy #genetics
November 18, 2024 at 1:11 AM
There are nearly 1,000 genes known to cause epilepsy. 800+ of them are associated with developmental and epileptic encephalopathy. #rareepilepsy #epilepsy #genetics
Reposted by Michele Collins
“Defend the vulnerable, speak the truth.” - David French
November 15, 2024 at 12:21 AM
“Defend the vulnerable, speak the truth.” - David French
Very happy to be here! Brought Teddy with me to say “Hi”.
November 13, 2024 at 11:31 AM
Very happy to be here! Brought Teddy with me to say “Hi”.