The Champ Foundation
@TheChampFound
Followers
314
Following
244
Media
45
Statuses
210
The Champ Foundation supports research toward better treatment and a cure for Pearson Syndrome and single large scale mtDNA deletion disorders.
Joined October 2015
We are thrilled to share our manuscript entitled “Pediatric single large-scale mtDNA deletion syndromes: The power of patient reported outcomes”
1
3
10
RT @JIMD_Editors: New #openaccess content from #JIMDReports exploring the burden on caregivers in mitochondrial disease. Understanding th….
0
3
0
RT @Agarwal_Lab: Delighted to have worked with the incredible team led by @CalebLareau, @LeifLudwig. Thanks to patients and families @TheCh….
0
1
0
Pearson syndrome newly diagnosed guidelines—now translated into 5 additional languages
0
1
2
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
0
2
7
It’s #GivingTuesday! Help @TheChampFound find treatment and a cure for Pearson syndrome and single large-scale mtDNA deletion disorders. Donate here:
0
1
1
RT @mito_gene: The @MRC_MBU @Mito_at_GU & @MolMet_KI spin-out company launched officially today with $72.5M Series….
0
18
0
1️⃣mission: to find treatment and a cure for Pearson syndrome and KSS 💪🏽 These champs are worth it.
0
0
7
6️⃣Champ grantees presented their research, including 2 newly funded grantees.
1
0
7
9️⃣clinician specialties represented. SLSMDS are multi-systemic and we had hematologists, neurologists, gastroenterologists, geneticists, palliative care and more represented.
1
0
5
1️⃣0️⃣countries where attendees came from! This wonderful family traveled from Italy!
1
0
4
1️⃣0️⃣children who participated in research (labs in the conference room, surveys, facial photograph). Effectively doubled our Natural History Study data in one day.
1
0
5
1️⃣5️⃣ families (largest gathering of individuals with SLSMDS, ever!)
1
0
4
SLSMDS Family and Scientific Conference by the numbers! Over 1️⃣0️⃣0️⃣ attendees and the dinner at the zoo and the scientific presentations
1
3
14
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 💪🏽
0
4
7
RT @mito_gene: Just concluded @TheChampFound 3rd conference on single large-scale mtDNA deletions SLSMDs - we met SLSMDs families & @PedroS….
0
5
0
Schedule of events can be found here: Excited to see @mito_gene @Agarwal_Lab and others in Philadelphia!.
0
2
2
The SLSMDS Family and Scientific Conference is in one week! It’s not too late to join us virtually. Register here:
1
0
2
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!
0
2
5