This week is #Cardiomyopathy Awareness Week, led by our Affiliates across the globe, including: Australia, Brazil, Canada, Germany, Ireland, Italy, Netherlands, Poland, Romania, Spain, Sweden, UK and the US. Learn more: globalhearthub.org/cardiomyopathy… #WhyGeneticsMatter

Common symptoms of #Cardiomyopathy include: • Shortness of breath • Fatigue • Swelling in the ankles, feet, legs or abdomen • Dizziness • Fainting during physical activity • Arrhythmias • Chest pain • Heart murmurs globalhearthub.org/cardiomyopathy… #CardiomyopathyAwareness2023

Did you know that the power to save lives from Sudden Cardiac Arrest (SCA) lies in the hands of bystanders? Today, the statistics tell a tale of hope and urgency: if bystanders intervene, the chances of survival could double! Let's make an impact today! #SCAfounation #CPR #AED

I only opened the article to read the comments! This is an article just begging for a comments section!! Who Knew the Colosseum Was So Old? Tourist Apologizes for Defacement. nytimes.com/2023/07/05/wor…

How do we facilitate informed consent for approved #genetherapy + #celltherapy products? Providers should acknowledge limits & share what they know to help patients navigate expectations, says Dr. Jodi Wolff (Rejuvenate Bio). #PatientEducation bit.ly/3Gzq7Zo

One way to shorten the diagnostic odyssey is to increase access to genetic counselors. Urge your Members of Congress to support the Access to Genetic Counselor Services Act (HR 3876/S 2323): votervoice.net/MDA/Campaigns/…

WoooHooo Minnesota! Great news!

A great read featuring leaders championing progress in global accessible travel. We were honored to have hosted some of these activists on our Accessible Travel Webinar! cntraveller.com/article/beyond…

Thanks for the warm welcome Parent Project Muscular Dystrophy (PPMD) ! Looking forward to seeing all we can do for our families! #endduchenne

via ⁦New York Times Opinion⁩ nytimes.com/2024/05/12/opi…

Stay up-to-date on #NewbornScreening progress for #Duchenne #MuscularDystrophy (#DMD) and hear from experts Paul Melmeyer, MDA, Lauren Stanford, Parent Project Muscular Dystrophy (PPMD), Annie Kennedy, EveryLife Foundation, and Jill Anne Castle, M.Ed, Little Hercules Fdn. Watch here: youtube.com/watch?v=UJL1d4…

#RareAcrossAmerica2024 registration is now open! This is YOUR opportunity to meet with your Members of Congress at their in-district offices and educate them on the issues that are most important to the rare community by sharing your story. Register now: bit.ly/42zU5oZ

Last week, PPMD held the 2024 Cardiac Care Workshop in Baltimore to discuss how to improve cardiac care to accelerate research, advance standards of care, and better understand #Duchenne and #Becker in a rapidly evolving and complicated landscape. parentprojectmd.org/mapping-out-a-…

Shout out to World Muscle Society for this incredibly family-friendly policy and facilitating participation in the congress with caregiver grants. Really cool thing to do. wms2024.com/page/caregiver…

Our Camp Promise Retreat in Akron, Ohio is just around the corner; please consider supporting and sharing Ohio’s Wish List for supplies needed to host a magical retreat! 🐷 amazon.com/registries/gl/…

PPMD is excited to share that a consensus statement providing insights from clinicians who care for patients with #Duchenne into the current therapeutic landscape and access to novel therapies has been published in the Annals of Child Neurology Society. parentprojectmd.org/consensus-stat…

businesswire.com/news/home/2024…

Greater awareness of cardiomyopathy and genetic screening are needed to support earlier diagnosis and improve health outcomes. Learn more at globalhearthub.org/think-cardiomy…. Global Heart Hub

Viva las vegas! See you there! #duchenne

The patriarchy is alive and well, ladies.