Daphne's Lamp

🚨Oppose AB 2223 🚨 AB 2223 aims to ban synthetic THC but also threatens legal full spectrum CBD, crucial for many patients. 1mg THC limits could restrict access to vital treatments for seizures, dementia, and pain. OPPOSE AB2223 @GovPressOffice @bonnigoldsteinmd @highat9newshour

2nd Annual CureARS Golf Classic 2023: Registration is OPEN! curears.org/golf-classic-2… #mitochondrialdisease #mito #researchingrare #fundingacure #golf wix.to/OmksbE8

I am honored to be speaking on this day on “The Power of Advocacy!” #raredisease #mitochondrialdisease #momvocate #mito

Did you know that every time you shop on Walmart.com, you can round up your change and donate it to @cure4ars ? Learn how small acts can lead to big impact at #WalmartSparkGood walmart.com/nonprofits/2b0… walmart.com/nonprofits/2b0…

That’s my girl! It’s only the first week of track practice and she got 3rd place.

⭐️Panel Highlight⭐️ Natural history studies in rare disease follow a group of patients over time to better understand and characterize the disease. To register: curears.org/2023-symposium #ars2science2023 #mitochondrialdisease

Join us for an update on our ongoing research project❗️ Register here: curears.org/2023-symposium For more information on this project visit: curears.org/chop-drug-repu… #ars2science2023 #mitochondrialdisease

Special thank you to Dr. Jose Abdenur and @chocchildrens for sponsoring our annual symposium! Dr. Abdenur will be speaking about his ongoing #research into the #DARS2 gene. Join us on February 10th, 2023 ➡️ curears.org/2023-symposium. #ars2science2023 #mitochondrialdisease

⭐️New Speaker⭐️ Meet Dr. Jennifer Yang, a Child Neurologist at Rady Children’s Hospital / University of San Diego (UCSD). @radychildrens #ars2science2023 #mitochondrialdisease #research To view our full agenda and register ➡️ curears.org/2023-symposium

✅ Register here: curears.org/2023-symposium #mitochondrialdisease #mito #raredisease #arsgenes #knowledgeispower #mitoresearch #research #choc #AARS2 #CARS2 #DARS2 #EARS2 #FARS2 #GARS #HARS2 #IARS2 #KARS #LARS2 #MARS2 #NARS2 #PARS2 #RARS2 #SARS2 #TARS2 #VARS2 #WARS2 #YARS2

Today is #RareDiseaseDay and I am a proud parent of a child with a #RareDisease. #ShowYourStripes movement in support of the rare community. Learn more on @RareDiseases website bit.Ly/us-rdd22

Incredible. That 80 people logged on at 5:45am for our The Mitochondrial ARS (Mt-aaRS) Genes Annual Scientific Symposium February 10, 2022 9:00AM EST - 5:00PM EST Virtual curears.org/symposium #RareDisease

This is my first time co-hosting with parents and scientists! Wow! This has been an incredible 30-days working with these two families. curears.org #healthcare #patientadvocates

Researchers from 5 countries. 80 attendees. 20 Scientists presented. Give parents a better understanding on what it takes to develop a research question and how we move research from patient to lab then back to the patient. The @cure4ars team is outstanding! #healthcare

NEWS: Committing to Care, Access, Equity, and Research: NORD Announces 31 #RareDisease #CentersOfExcellence. Read more: bit.ly/2ZWaOIy "NORD is committed to breaking down silos and building bridges," - Ed Neilan, Chief Scientific and Medical Officer, NORD.

Did you know that more than 90% of #RareDiseases are without a @US_FDA-approved treatment? Check out NORD’s #RareInsights fact sheet to read on: bit.ly/2Zplsnp

NEWS: NORD’s RareLaunch Program Announces Expanded Course Learning to Help Launch and Grow Rare Disease Nonprofits. Read more: bit.ly/3Ak2vnr

"The Age of CRISPR has redefined the meaning of the term 'druggable target.' New definition: if it's in the genome, it's a druggable target." Fyodor Urnov, PhD, @igisci @GlobalGenes #GGSummit

Day 2! Here we go United we do more 🙂 #RareDC2021

@GlobalGenes Announces New Multimedia Series Focused on Advances in Gene Therapy and Editing, in Collaboration with the National Institutes of Health (NIH)