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

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

2025
Coneflowers
Infrared can make mundane things look new again.
I converted an Olympus E-PM1 to capture the ir portion of the spectrum.
The conversation was very simple and very irreversible and only took about five minutes.
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#infraredphotography #epm1 #diyphotography #irphotography

Join us for Brain Awareness Week! Together, we can raise awareness and support brain research! (5/5)
#BrainAwarenessWeek #FolkhälsanResearch #Folkhälsan #Neuroscience #BrainResearch #EPM1

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

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...

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

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

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

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

ソフトウェア : DxO PhotoLab 7.6
１枚目：ノイズ除去なし
２枚目：ノイズ除去高品質
３枚目：ノイズ除去DeepPRIME XD
オールドデジカメ、RAW撮影してノイズ除去ソフト処理がオヌヌメかと思いまうす

F値 : F8.0
焦点距離 : 15.00(mm)
露出時間 : 1/30秒
ISO感度 : 12800
露光補正量 : EV-1.0

#penepm1 #epm1 #Olympus #OlympusPEN #bcl1580 #photography #dxophotolab7