Tune in to the latest episode of the Energy In Action podcast. This episode features Jonathan Mordis, Houry Lepedjian and Jennifer Kmetich from Chemistry Rx as they give expertise in compounding formulations for mito. Visit our website to listen. buff.ly/3VcNNcV

Thank you Effie Parks for having me on Effie Parks (effieparks.com) to talk all things genetic counseling and testing! Make sure you listen to this episode, and subscribe to Once Upon a Gene! 🧬 #raredisease #genechat

“Mercy means compassion, empathy, a heart for someone’s troubles. It’s not something you do—it is something in you, accessed, revealed, or cultivated through use, like a muscle.” ~ANNE LAMOTT

“This is the greatest mercy I know, a loved one hearing and nodding, even if over the phone.” ~ANNE LAMOTT

#HNRNPH is a lucky bunch💜 See y'all tomorrow #PodcastForACause

The people who have taught me the most didn’t think they were my teachers; they just thought they were my friends.

We are just 1 month away from the very first MitoAction Energy Walk in Hartford, CT! If you are interested in joining us at the walk on Saturday, September 7th at Great River Park, click the link or visit our website to register and start fundraising! buff.ly/3yllL7R

If you are newly diagnosed or finally coming up for some air, this episode is for you. Please send this episode to a family whose child was recently diagnosed with a #RareDisease effieparks.com/podcast/episod…

My friends and I think a lot about what language to use with seriously ill patients and how it impacts healing. Sometimes we write about it for Mayo Clinic Proceedings ❤️‍🩹Leonard Berry Gillian Grafton Never-Words: What Not to Say to Patients With Serious Illness sciencedirect.com/science/articl…

“On a bad day you…don’t need a lot of advice. You just need a little empathy and affirmation.” ~ANNE LAMOTT

"The truth is we are all terminal on this bus. To live as if we are dying gives us a chance to experience some real presence. Time is so full for people who are dying in a conscious way, full in the way that life is for children." ~ANNE LAMOTT

Well deserved!!

Join MitoAction and Dr. Amel Karaa at 12 pm EST today for an Expert Series presentation on Mitochondrial Disease and PMM. There is still time to register on our website if you’d like to join! buff.ly/4e6Xz8j

Following our RAREly Told Stories Workshop in Feb, we’re excited to start sharing some of the incredible short films submitted! Learn about SYNGAP1 with Jansen & her family🎥: globalgenes.org/blog/jansens-j… #CareAboutRare #RareDisease #RARElyToldStories #SYNGAP1Awareness #SYNGAP1

“[Sober people] taught me that being of service, an ally to the lonely and suffering, a big-girl helper to underdogs, was my best shot at happiness.” ~ANNE LAMOTT

Join us as we share important mito facts all week long. Together, we can raise awareness and help our community learn more about mitochondrial disease. Don’t forget to share! #WorldMitoWeek buff.ly/3yUcLAG

"Having a brother with a rare disease created a bond within the family that can't be explained. We are so thankful and proud of who we are because of it." - Matt Flesch #RareDiseaseSibling #WeekInRare Global Genes

When patient advocacy and research come together, we move treatments out of the lab and into patients who need them. Collaboration and partnership make change possible! Really exciting day of breathtaking science and discovery ASBMR #PatientAdvocacy #RareBone

"Preparing & coaching your healthcare team to have open, honest dialogues w/ pts about intimate partner violence is essential. Failure to screen & address this matter is dangerous, while doing so can save lives."-Michelle Patch, MSN Johns Hopkins Medicine tinyurl.com/2tmpzc9t

We hear about ‘mental health’ everywhere these days. Companies, organizations, and campaigns seem to throw the term around like a box to be checked - but where’s the real, actionable support? For caregivers, the struggle is unique. We don’t just need to hear about mental health -