1/12. Thrilled this paper is now published; It´s the backbone of my PhD thesis We exploired: 1) How common are monogenic epilepsies at a tertiary epilepsy center? 2) How often can we tailor treatment based on genotype? 3) Efficacy of treatment adjustment? pubmed.ncbi.nlm.nih.gov/35723786/

Excited to learn more about this!

This is great news!

We are so grateful for this research, and for all of the work your team has done to help the fight against #EPM1 #ULD!!!

It is beginning to look like Christmas - meeting with EpiCARE Excecutive Committee and discussing future of #rareandcomplexepilepsies #Rome #Vatican Bambino Gesù

Congratulations!!! We are so grateful for your work!

Great steps forward with gene therapy of progressive myoclonic epilepsy type 1 #epm1 #uld and moving towards clinical studies #rareepilepsies EpiCARE Hope for ULD™ - in Finland contact UEF Brain Research Unit if not already registered to our #epm1 database

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. lnkd.in/eX3RMyCw

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 hopeforuld.org/our-stories

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... hopeforuld.org/research

Please follow us on Bluesky here: bsky.app/profile/hopefo…

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

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

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

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

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

Important words from an organization that has helped to fund #ULD #EPM1 research! #UnverrichtLundborgDisease #RareEpilepsy #genetherapy

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

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…