Hope for ULD™
@HopeforULD
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Our mission is to fund Unverricht-Lundborg Disease research, treatment, and education. #unverrichtlundborgdisease #ULD #EPM1 #genetherapy
United States
Joined January 2018
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.
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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:
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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! #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! .#epm1 #unverrichtlundborgdisease.
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RT @HopeforULD: In dealing with an ultra rare disease, we are EXTREMELY fortunate to have scientists that have devoted years to stopping th….
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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!!! #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: 2. The ULD/EPM1 Natural History Study:  💜 #epm1 #unverrichtlundborgdisease #genetherapy #RareEpilepsy.
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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.
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In honor of Purple Day, here are some stories of those heroes who live with the devastating effects of ULD every day. #unverrichtlundborgdisease #rareepilepsy #epm1 #genetherapy #uld .
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On Rare Disease Day, we're proud to shine a light on pre-clinical research we've helped fund for a gene therapy for ULD/EPM1.
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RT @rkalviainen: Great steps forward with gene therapy of progressive myoclonic epilepsy type 1 #epm1 #uld and moving towards clinical stud….
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RT @AllanBayat: 1/12. Thrilled this paper is now published; It´s the backbone of my PhD thesis.We exploired:.1) How common are monogenic ep….
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RT @rkalviainen: It is beginning to look like Christmas - meeting with @EpiCARE_ERN Excecutive Committee and discussing future of #rareandc….
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We are so grateful for this research, and for all of the work your team has done to help the fight against #EPM1 #ULD!!!.
Great new work regarding #EPM1 #ULD from our group in order to find new solutions for this challenging disease @HopeforULD @EpiCARE_ERN @UEFneuroscience.
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This is great news!.
Our new publication of home monitoring of negative myoclonus in progressive myoclonus type 1 #epm1 #ULD relevant also in other forms of myoclonus @RissanenSaara @HUMEA_Lab @UEFneuroscience @Pshyvinvointi @HopeforULD #codedtoconnect.
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Excited to learn more about this!.
Jelena Hyppönen Kuopio Epilepsy Center @Pshyvinvointi @EpiCARE_ERN and @UEFneuroscience presenting new findings about #epm1 #uld #rareepilepsies that might help us to reveal the pathogenesis of the disease #IEC2023 Dublin
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