Top Tweets for #ppa2
Claire's story is so moving and that is our why! An incredible partnership with the RareDNA foundation @rarednafound makes this research effort possible to understand how PPA2 impacts the heart! #PPA2
Tune in tonight on @FOX9 to learn more about what the @UMNews (U of M Medical School) is doing to help PPA2!!🫀🩵💜
#RareDNA #PPA2 #HeatbeatforHope #geneticheart
Tune in tonight on @FOX9 to learn more about what the @UMNews (U of M Medical School) is doing to help PPA2!!🫀🩵💜
#RareDNA #PPA2 #HeatbeatforHope #geneticheart
13 days left to support research for #PPA2 at the UofM. Who do you donate in honor of? your athlete, who still gets to play? Someone with Heart Failure? Someone who survived #SCA? Someone with #Raredisease? Someone with #genetichearts?
Donate here: https://t.co/YDvZ9nzkom
#Rare
A powerful moment in rare disease research 💙
Claire shares the beginning of groundbreaking stem cell work for #PPA2. Your donation fuels the next discovery & save lives!
👉 Donate today to keep the momentum going.
https://t.co/LFMrDuEuDU
#standingwithclaire #HeartbeatForHope
Grateful to hit our first milestone of $2,500 in the RareDNA Foundation 30 Day Challenge 💙
We’re still pushing toward our $20K goal—please keep sharing and supporting to help us get there. Donate: https://t.co/LFMrDuEuDU
#GeneticHearts #HeartbeatForHope #StandingWithClaire #PPA2
A little update from our President & Co-Founder (also known as mom 😉) 30 Day Challenge is going strong! Every $ counts! Donate here today: https://t.co/LFMrDuEuDU
#genetichearts #standingwithclaire #heartbeatforhope #30daychallenge #RareDNA #PPA2
This is our WHY. What’s yours?Answers are waiting for Claire and the others who have survived sudden cardiac events, but only if the research can be funded. We’re on a mission to raise $20K in 30 days!
Donate:
https://t.co/LFMrDuEuDU
#HeartbeatsForHope #standingwithclaire #PPA2
Incredible launch day for our #30DayChallenge! 🩵
Help us hit $2,500—or go big and push us to $5K. Every share spreads awareness for #PPA2.
Donate: https://t.co/LFMrDuEuDU
#HeartbeatForHope #standingwithclaire #genetichearts #mymitostory
Thank you for everyone who showed up and supported our first two awareness nights! Off to a great start to find some answers for #PPA2 and other rare #genetichearts.
#RareDNAFoundation
#StandingWithClaire
#mymitostory
Awareness of PPA2 and genetic heart mutations is our number one priority to start. Grateful to Grant at @PGHMinnesota for helping to spread Claire’s Story.
#RareDNAFoundation
#genetichearts
#standingwithclaire #EveryMomentMatters
#basketball
#PPA2
https://t.co/rxBgm2rcww
2 years ago, I had one of the 2 worst calls of my life. We got the diagnosis of you inheriting #ppa2 deficiency, the mitochondrial disease that stole Alexander.I'd spent the day watching your vibrancy, convincing myself you didn't have it. I'll forever share your beautiful life X
While there is currently no treatment or cure for PPA2 Deficiency, most individuals receive a defibrillator, avoid exposure to ethanol and sometimes vinegar, and promptly manage viral illnesses using an emergency management protocol provided by their treating doctors. #PPA2 #TuesdayTakeover #RareDisease #Genetics #PatientAdvocacy
UMDF's Maddie Lacey caught up with Kathleen at #MitoMed in St. Louis, who's most looking forward to learning more about #mitochondrialdisease, the connections with other families and specialists, and the opportunity to share more about her son's condition, #PPA2 deficiency.
To anybody newly bereaved: you will feel better than now. You will find a new normal. You will dig deeper. Much love X #grief #childloss #ppa2
@SUDCUK1 but also, crucially, helped us navigate the systems and find answers. We will only be able to do this for other families if we continue to raise funds and do more research. So please join us on our #ambleforalexander 💙💙💙 #sudc #ppa2 #sudic
https://t.co/h7csbdH688
#PPA2.0 could be the lifeline for patients overlooked by current FDA processes! We are backing Senate bill S.1906, the #PromisingPathwayAct, for its potential to save lives. Let's prioritize children battling terminal and rare cancers. @MichaelBennet
I'm slowly getting more used to life since the diagnosis. Anxiety still cripples me, but she's still the same cheeky, brave, healthy and happy girl. Nothing has changed for her, so we have to try and keep life as calm and normal as possible for her too. #grief #childloss #ppa2
@f3Alpes Et toujours pas dans la vallée de l’Arve pour constater les dégâts de la pollution de l’air (et au passage condamner l’inutilité du préfet et l’inefficacité du #PPA2 ?). Étrange cette omerta quand même… @JeanCASTEX @olivierveran #montblanc #valleedelamort #hautesavoie
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