Michele Collins's Avatar

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

206 Followers  |  470 Following  |  15 Posts  |  Joined: 12.11.2024  |  2.2676

Latest posts by micheledcollins.bsky.social on Bluesky

Yum!

25.09.2025 02:10 β€” πŸ‘ 1    πŸ” 0    πŸ’¬ 0    πŸ“Œ 0
Preview
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.

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

31.03.2025 23:29 β€” πŸ‘ 36    πŸ” 15    πŸ’¬ 4    πŸ“Œ 0

This awesome account is worth a follow, whether you are in Cleveland or not!

28.03.2025 01:46 β€” πŸ‘ 2    πŸ” 0    πŸ’¬ 0    πŸ“Œ 0
Rare Disease Day--there are more rares than you can imagine!

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

28.02.2025 21:24 β€” πŸ‘ 4    πŸ” 1    πŸ’¬ 0    πŸ“Œ 0
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.Β The National Institutes of Health (NIH), has announced dramatic cuts to all research funding that will dismantle biomedical r...

Important 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€” πŸ‘ 1    πŸ” 2    πŸ’¬ 0    πŸ“Œ 0
Preview
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.

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

22.02.2025 03:25 β€” πŸ‘ 1    πŸ” 2    πŸ’¬ 0    πŸ“Œ 0

Joni Eareckson Tada

15.01.2025 11:24 β€” πŸ‘ 0    πŸ” 0    πŸ’¬ 0    πŸ“Œ 0
Video thumbnail

Dogs on the news is my new favorite thing

14.01.2025 16:11 β€” πŸ‘ 60    πŸ” 14    πŸ’¬ 2    πŸ“Œ 0

My husband said the same thing when we watched it this year!

25.12.2024 13:04 β€” πŸ‘ 1    πŸ” 0    πŸ’¬ 0    πŸ“Œ 0

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

21.11.2024 21:10 β€” πŸ‘ 30    πŸ” 7    πŸ’¬ 9    πŸ“Œ 0
Video thumbnail

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

25.11.2024 19:41 β€” πŸ‘ 4    πŸ” 1    πŸ’¬ 0    πŸ“Œ 0

I am so glad that you are here!!

24.11.2024 16:37 β€” πŸ‘ 0    πŸ” 0    πŸ’¬ 0    πŸ“Œ 0

Cavs

21.11.2024 16:59 β€” πŸ‘ 0    πŸ” 0    πŸ’¬ 0    πŸ“Œ 0

I second this!

20.11.2024 11:16 β€” πŸ‘ 1    πŸ” 0    πŸ’¬ 0    πŸ“Œ 0
Preview
Research | mysite

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

13.11.2024 20:12 β€” πŸ‘ 2    πŸ” 1    πŸ’¬ 0    πŸ“Œ 0

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

13.11.2024 22:21 β€” πŸ‘ 25    πŸ” 9    πŸ’¬ 17    πŸ“Œ 7
Post image

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€” πŸ‘ 8    πŸ” 1    πŸ’¬ 0    πŸ“Œ 0

Thank you 😊

18.11.2024 14:20 β€” πŸ‘ 0    πŸ” 0    πŸ’¬ 0    πŸ“Œ 0

So very glad that you are here!

18.11.2024 11:15 β€” πŸ‘ 1    πŸ” 0    πŸ’¬ 0    πŸ“Œ 0

β€œDefend the vulnerable, speak the truth.” - David French

15.11.2024 00:21 β€” πŸ‘ 419    πŸ” 61    πŸ’¬ 12    πŸ“Œ 0

So grateful to be here with people who care about justice and truth. #TeamJustice #JusticeMatters

14.11.2024 03:11 β€” πŸ‘ 0    πŸ” 0    πŸ’¬ 0    πŸ“Œ 0
Post image

Very happy to be here! Brought Teddy with me to say β€œHi”.

13.11.2024 11:31 β€” πŸ‘ 6    πŸ” 0    πŸ’¬ 0    πŸ“Œ 0

I am glad that you are here!!

13.11.2024 11:22 β€” πŸ‘ 0    πŸ” 0    πŸ’¬ 0    πŸ“Œ 0

I just got here, too. I think that this is a good place to be!

13.11.2024 03:17 β€” πŸ‘ 3    πŸ” 0    πŸ’¬ 0    πŸ“Œ 0

Totally agree!!

12.11.2024 17:27 β€” πŸ‘ 0    πŸ” 0    πŸ’¬ 0    πŸ“Œ 0
Post image

Teddy is here!

12.11.2024 14:46 β€” πŸ‘ 2    πŸ” 0    πŸ’¬ 0    πŸ“Œ 0

@micheledcollins is following 20 prominent accounts