The Champ Foundation supports research toward better treatment and a cure for Pearson Syndrome and single large scale mtDNA deletion disorders.
Joined October 2015
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We are thrilled to share our manuscript entitled “Pediatric single large-scale mtDNA deletion syndromes: The power of patient reported outcomes” sciencedirect.com/science/ar…
@friedberg We loved the last science corner on the @theallinpod and share your enthusiasm! We’ve been supporting trials and studies in mitochondrial transplant for several years. We know a few folks you should talk to!
Pearson syndrome newly diagnosed guidelines—now translated into 5 additional languages thechampfoundation.org/newly…
It’s Rare Disease Day! These Champs are all one in a million, but they don’t need a disease to make them so special! #RareDiseaseDay #RareAsOne
It’s #GivingTuesday! Help @TheChampFound find treatment and a cure for Pearson syndrome and single large-scale mtDNA deletion disorders. Donate here: thechampfoundation.org/donat…
SLSMDS Family and Scientific Conference by the numbers! Over 1️⃣0️⃣0️⃣ attendees and the dinner at the zoo and the scientific presentations
The SLSMDS Conference was an incredible success! Thank you to our researchers who shared their work, CHOP for hosting, @cziscience for making it possible, and most importantly, to the families who attended! We hope everyone is feeling as motivated as we are 💪🏽
The SLSMDS Family and Scientific Conference is in one week! It’s not too late to join us virtually. Register here: eventbrite.com/e/single-larg…
Schedule of events can be found here: thechampfoundation.org/july-…. Excited to see @mito_gene @Agarwal_Lab and others in Philadelphia!
Register now! SLSMDS Family and Scientific Conference 7/8 and 7/9 in Philadelphia, PA. Zoo picnic on Friday night and scientific event on Saturday at @CHOP. Virtual option for Saturday available! eventbrite.com/e/single-larg…
The day ended with a technology showcase and a poster session highlighting the work of #RareAsOne Network grantees
Grateful to share our work with the Champ Foundation Registry at the @cziscience #RareAsOne conference! A meeting of the minds highlighting patient voices and working towards cures for rare diseases!
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William is #Rare! Pearson syndrome is considered an ultra-rare disease.
William, and champs like him, are some of the most unique kids in the world, but they don't need a disease to make them so special! 💚💪🏼🥊 #RareDisease #RareDiseaseDay #RareAsOne
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Today @PedroSiPinheiro etal. report on the in vivo use of mito DNA base editing #DdCBE to install a novel #mtDNA mutation in the heart of adult and neonatal mice. This PoC that could lead to future therapies for #MitoDisease @natcomms @MRC_MBU @chrismutti1 nature.com/articles/s41467-0…
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We are so excited to have been selected to receive a third year of funding from @cziscience. We will continue supporting our Natural History Study (and participant travel) and the CFR registry, bringing us closer to treatment and a cure for Pearson syndrome and SLSMDS #RareAsOne
At @ChanZuckerberg, we believe that science is better when patients are equal partners in research, so we’re launching two new RFAs centering patient-partnered collaboration 🧵 #RareDiseaseMonth bit.ly/3ASTYIv
We speak at 1:41:24 to give an update and plans for 2022. Highlights include continuing our Natural History Study and supporting patient travel, another conference, and our biggest grant cycle yet. More details coming soon!
The annual Town Meeting on Friday was full of great information and hope for the mito community in 2022! If you missed the call, the recording is now available on our YouTube Channel and website.
youtu.be/J5LCHf0kkWg
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We are looking forward to participating in this event!
Happy New Year!
Are you wondering what is on the horizon for the mitochondrial disease community in 2022? Join us this Friday at 12:00pm EST for the annual town meeting to find out!
RSVP by visiting buff.ly/3rOTpNw
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