Hope for ULD

Research!America Statement: Research Community Unites in Support of Federally Funded Research - Research!America Arlington, VA – Research!America, a nonprofit medical and health research alliance, this week sent leaders of the House and Senate Appropriations Committees a letter signed by 600 organizations and mo...

Please join us in urging Congress to reject the proposed 38% cut to the National Institutes of Health (NIH) included in the president’s FY26 budget request. THIS IS CRUCIAL for our goal of human gene therapy clinical trials. www.researchamerica.org/press-releas...

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...

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

Research | mysite

The long-awaited ULD/EPM1 Natural History Study is underway. We currently need more participants. This study is a crucial next step. #ULD families, if you have not yet contacted Josh Rong to sign up, please email him ASAP! www.hopeforuld.org/research
#epm1 #unverrichtlundborgdisease #genetherapy

Nearly every medicine we benefit from started with NIH-funded research. Early discovery work starts in academia.

Immunotherapies?
Gene therapy for rare diseases?
Alzheimer’s and Parkinson’s medicines?
Vaccines?
Novel cancer treatments?
Psychiatric medicines?

You betcha.

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Do lesions that cause psychosis fall into a common brain network?

Exciting new work by @andrewpines.bsky.social, @shansiddiqi.bsky.social and colleagues – tweetorial below by the first author, paper here:
jamanetwork.com/journals/jam...

Research | mysite

Please forward this to all ULD/EPM1 patients you know! Help the researchers HELP YOU!!! If you have not yet joined the ULD/EPM1 Natural History Study, contact Joshua Rong at Joshua.Rong@childrens.harvard.edu www.hopeforuld.org/research #epm1 #unverrichtlundborgdisease #genetherapy #RareEpilepsy

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

We are pausing on this Giving Tuesday to celebrate the work of our researchers. Their tireless efforts keep bringing us closer to the goal of ending the suffering caused by ULD/EPM1. #epm1 #unverrichtlundborgdisease #RareEpilepsy #genetherapy #GivingTuesday

CSTB gene replacement improves neuroinflammation, neurodegeneration and ataxia in murine type 1 progressive myoclonus epilepsy - Gene Therapy Gene Therapy - CSTB gene replacement improves neuroinflammation, neurodegeneration and ataxia in murine type 1 progressive myoclonus epilepsy

We are #thankful for 1. Results of research: www.nature.com/articles/s41....
2. The ULD/EPM1 Natural History Study:  www.hopeforuld.org/research. Embracing thankfulness and hope! 💜 #epm1 #unverrichtlundborgdisease #genetherapy #RareEpilepsy

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

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We strongly suggest that academic publishers and other platforms that host research rapidly implement a Share to Bluesky button for their articles. Here's how:

docs.bsky.app/docs/advance...

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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

Hi all, we are happy to be here. Teddy says "Hi!" He helps one family as they deal with ULD (Unverricht-Lundborg Disease), also known as EPM1. #EPM1 #ULD #UnverrichtLundborgDisease #RareEpilepsy #RareEpilepsyNetwork #genetherapy