Hope for ULD

There is hope for Unverricht-Lundborg Disease!

On this Rare Disease Day 2026, we are holding onto HOPE, as we work to stop the suffering caused by Unverricht-Lundborg Disease (ULD/EPM1). #RareDiseaseDay #unverrichtlundborgdisease #epm1 #hopeforuld #genetherapy

Donate | mysite

More prayers are appreciated, and, if interested, you can donate here: www.hopeforuld.org/donate #raredisease #rareepilepsy #unverrichtlundborgdisease #genetherapy #givingtuesday

overwhelming, but the suffering of our son and other ULD patients, each with a heartbreaking story, keeps me in the fight. Please know that we are unbelievably grateful for the countless prayers and donations that we have received throughout the years...

like a concussion that will not heal. He is fighting to regain a clear perception of reality, instead of feeling like he is in a confusing nightmare. This is progressive, so things are getting worse. Medications constantly need to be adjusted. The financial goals for clinical trials seem...

for very costly human clinical trials. After 3 months in the hospital, including time on a ventilator, our son is fighting, too, to regain his abilities to talk clearly, sit up in bed, and move around in his wheelchair. He is fighting to stop the seizures and the confusion that feels like...

Thoughts on Giving Tuesday: As the founder of Hope for ULD, I will tell you that we are still in the midst of the fight to stop the suffering. Our researchers are working every day to learn more. Past successes of the ULD gene therapy mouse trials are paving the way for...

The loss of dreams. The loss of abilities. The loss of freedom. The loss of a pain-free life. And because the disease is progressive, things get worse. This is why Hope for ULD exists.

Usually patients eventually have trouble speaking. Their brains are not evenly affected by the disease. Bright and articulate thinkers suddenly have trouble verbalizing and can become confused. ULD affects people differently, but most patients and their families suffer trauma, grief, and loss.

They are hard to control. They can be relentless. They slowly change life. Eventually, they often take away the ability for patients to walk safely, causing MANY falls and injuries. Many patients end up needing to use wheelchairs. Once easy daily personal care tasks can become impossible...

Young boy holding a bat in a baseball uniform

Epilepsy Awareness Month Facts: Children with ULD (EPM1) can play sports, excel at school, run, jump and swim, UNTIL ONE DAY, usually between the ages of 6 and 15, the seizures begin...
www.hopeforuld.org/our-stories #unverrichtlundborgdisease #RareEpilepsy #GeneTherapy #epm1 #PME #epilepsyawareness

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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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