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Hope for ULD

@hopeforuld.bsky.social
128 followers 295 following 22 posts

Hope for ULD is uniting patients, families, doctors, and researchers to fund research, treatment, and education for Unverricht-Lundborg Disease ( #ULD ), also known as #EPM1. Learn more here: www.hopeforuld.org #RareEpilepsy #genetherapy

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Hope for ULD @hopeforuld.bsky.social · 05/09/2026
Why do a #NaturalHistoryStudy? 1.) Build more knowledge about ULD 2.) Build the foundation for successful clinical trials. 3.) Learn what meds, interventions, and support are most helpful. #unverrichtlundborgdisease #genetherapy #raredisease #epm1
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Hope for ULD @hopeforuld.bsky.social · 28/02/2026
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
There is hope for Unverricht-Lundborg Disease!
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Hope for ULD @hopeforuld.bsky.social · 02/12/2025
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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Hope for ULD @hopeforuld.bsky.social · 23/11/2025
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
Young boy holding a bat in a baseball uniform
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Hope for ULD @hopeforuld.bsky.social · 17/05/2025
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...
researchamerica.org
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...
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Hope for ULD @hopeforuld.bsky.social · 28/02/2025
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
Rare Disease Day--there are more rares than you can imagine!
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Hope for ULD @hopeforuld.bsky.social · 25/02/2025
Important words from an organization that is funding ULD/EPM1 research! # unverrichtlundborgdisease #epm1 #RareEpilepsy #genetherapy epilepsynewengland.org/news/my-stor...
epilepsynewengland.org
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...
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Hope for ULD @hopeforuld.bsky.social · 22/02/2025
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
hopeforuld.org
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.
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Hope for ULD @hopeforuld.bsky.social · 17/02/2025
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
hopeforuld.org
Research | mysite
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Reposted by Hope for ULD
Andrea Love, PhD | Biomedical Scientist @drandrealove.bsky.social · 12/02/2025
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. 1/
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Reposted by Hope for ULD
Andreas Horn @andreashorn.org · 12/02/2025
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...
jamanetwork.com
Mapping Lesions That Cause Psychosis
This case-control study analyzes published cases of lesion-induced psychosisTo assess whether lesions that cause secondary psychosis have functional connections to a common brain circuit
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Hope for ULD @hopeforuld.bsky.social · 06/02/2025
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
hopeforuld.org
Research | mysite
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Reposted by Hope for ULD
Rikke S. Møller @rikkesmoller.bsky.social · 21/11/2024
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
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Hope for ULD @hopeforuld.bsky.social · 03/12/2024
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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Hope for ULD @hopeforuld.bsky.social · 28/11/2024
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
nature.com
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
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Hope for ULD @hopeforuld.bsky.social · 25/11/2024
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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Reposted by Hope for ULD
Altmetric @altmetric.com · 18/11/2024
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... #AcademicSky #HigherEd #Altmetrics
docs.bsky.app
Action Intent Links | Bluesky
Authors, websites, and apps can use action intent links to implement "Share on Bluesky" buttons, or similar in-app actions. Logged-in users will be directed to the corresponding action view in the Blu...
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Hope for ULD @hopeforuld.bsky.social · 13/11/2024
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
hopeforuld.org
Research | mysite
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Hope for ULD @hopeforuld.bsky.social · 13/11/2024
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
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