Why do a #NaturalHistoryStudy? 1.) Build more knowledge about ULD 2.) Give researchers the foundation upon which to build successful clinical trials. 3.) Learn what meds, interventions, and support are most helpful. #unverrichtlundborgdisease #genetherapy #raredisease #epm1
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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
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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...
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More prayers are appreciated, and, if interested, you can donate here: hopeforuld.org/donate
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for clinical trials seem 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...
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feels 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 keep getting worse. Medications constantly need to be adjusted. The financial goals...
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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...
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#EpilepsyAwareness 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... hopeforuld.org/our-stories #unverrichtlundborgdisease #RareEpilepsy #GeneTherapy #epm1 #PME
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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. Most patients and their families suffer great trauma, grief, and loss...
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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.
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Please join us in urging Congress to reject the proposed 38% cut to the NIH included in the president’s FY26 budget request. THIS IS CRUCIAL for our goal of human gene therapy clinical trials. researchamerica.org/press-releases…
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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
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Important words from an organization that has helped to fund #ULD #EPM1 research! #UnverrichtLundborgDisease #RareEpilepsy #genetherapy
Dr. Philip G. Haydon, President of @sailforepilepsy and an internationally recognized neuroscientist who lives with #epilepsy, shares his thoughts on the severe impact of NIH funding cuts: lnkd.in/eAZs5CUb
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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! hopeforuld.org #epm1 #uld #unverrichtlundborgdisease #genetherapy #RareEpilepsy #hopeforuld
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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! hopeforuld.org/research
#epm1 #unverrichtlundborgdisease
#epm1 #unverrichtlundborgdisease
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Hope for ULD™ retweeted
In dealing with an ultra rare disease, we are EXTREMELY fortunate to have scientists that have devoted years to stopping the suffering caused by ULD. PLEASE help the researchers HELP YOU!!! hopeforuld.org/research #epm1 #unverrichtlundborgdisease #genetherapy #RareEpilepsy
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In dealing with an ultra rare disease, we are EXTREMELY fortunate to have scientists that have devoted years to stopping the suffering caused by ULD. PLEASE help the researchers HELP YOU!!! hopeforuld.org/research #epm1 #unverrichtlundborgdisease #genetherapy #RareEpilepsy
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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
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We are #thankful for 1. Results of research: nature.com/articles/s4143….
2. The ULD/EPM1 Natural History Study:  hopeforuld.org/research. 💜 #epm1 #unverrichtlundborgdisease #genetherapy #RareEpilepsy
2. The ULD/EPM1 Natural History Study:  hopeforuld.org/research. 💜 #epm1 #unverrichtlundborgdisease #genetherapy #RareEpilepsy
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