MitoAction (@MitoAction) header
MitoAction (@MitoAction) profile picture

MitoAction is a 501(c)3 charity, tax id 55-0899427, that provides support, advocacy & educational resources FREE for all those affected by mitochondrial disease

Boston, MA
Joined June 2009
Photo by MitoAction (@MitoAction)Photo by MitoAction (@MitoAction)Photo by MitoAction (@MitoAction)Photo by MitoAction (@MitoAction)Photo by MitoAction (@MitoAction)Photo by MitoAction (@MitoAction)Photo by MitoAction (@MitoAction)Photo by MitoAction (@MitoAction)Photo by MitoAction (@MitoAction)Photo by MitoAction (@MitoAction)
Rare Disease Day is Tuesday! We will be in Lansing supporting Rep. @JasonMorganMI who stands with us! After our Noon press conference he will introduce a bill to create the Rare Disease Advisory Council. This gives us a voice! #CF #raredisease @RareDiseases @michbio @MitoAction
3
6
407
Yesterday was day 2 of #MitochondrialDisease awareness week. My daughter Emma (@Bake4Mito) & I share about #mito, a disease that has impacted me & my family over the last three years. Check it out & follow along as we discuss more throughout the week! #GreenForMito @MitoAction
3
9
4
32
Who's ready to jump into the New Year? Let's make a splash! 💦 #HappyMonday
2
14
MitoAction retweeted
Our Leigh Syndrome registry is now likely the largest in the world by the number of genetically confirmed diagnosis! This is making it very valuable to those running clinical trials or learning about Leigh Syndrome! curemito.org/registry
The next episode of my podcast series, Parents As Rare, is live! Guest Nathan Peck (@LostTexanInGA) & I discuss advocacy, his work with @CureVCPDisease, & parenting while living with a #RareDisease. Check it out here: rarediseasedad.com/parents-a… #Mito #CureVCP #ParentsAsRare
New Energy in Action Podcast Alert! 🎧⁠ EP: 36 Parents As Rare ➡️ Parenting with VCP Disease. Listen on our website (link in bio > Energy in Action Podcast⁠), Amazon Music, Spotify, Apple Podcasts, or Google Podcasts.⁠ #mitoaction #rarediseasepodcast #energyinaction
Join @MitoAction and Dr. Richard Boles on Friday, 11/5 for our November Mito Expert Series Presentation: Whole #Genome Sequencing with Comprehensive Re-Analysis. You find more information here: bit.ly/3beF3wr #MitoAction #MitochondrialDisease #SupportEducateAdvocate
1
1
3
MitoAction retweeted
Congratulations to our Medical and Scientific advisor @AlePrigio on his latest accomplishments in Leigh syndrome research
I am super excited to share our latest work!! We developed a human model of Leigh syndrome with brain organoids. Thread below. Led by @GizCicada with @N_Rajewsky @MDC_Berlin, @HHU_de, @MedHHU, @StemCellsNRW, @SpringerNature, @NatureComms Full text: rdcu.be/chxc4
1
2
5
I’ll be hosting another #MitochondrialDisease support call for men in the community this Sunday, 10/17 at 1:00pm ET. It’s a safe space to connect, support, & be supported. Reach out if you have questions! #Mito #RareDisease #MentalHealth @MitoAction mitoaction-org.zoom.us/meeti…
MitoAction retweeted
Have you missed our webinar with @MitoAction and @_allstripes ? You can watch the recording here: lnkd.in/e6y4gfzM For more information: lnkd.in/e2RVjWdT #curemito #hope #research #leighsyndrome
5
4
💚Tour de #SanFrancisco for #MitoDisease Awareness Week!💚 Thank you to @_allstripes , @MitoAction, @cure_mito, and all of the wonderful organizations & people paving the way toward a better future for #RareDisease families!
1
9
It’s Mitochondrial Disease Awareness Week - spread the word! And wear something green if you have it! Www.Mitoaction.org/awareness… #greenformito #mitoaction #mitoawarenessweek #worldmitodiseaseweek
4
5
MitoAction retweeted
Thanks to community participation, the first set of data insights from our AllStripes research program is now available! Learn more at allstripes.com/leigh **NOW OPEN TO ALL LS MUTATIONS**
3
8
MitoAction retweeted
Listen in to learn about a new partnership focused on Leigh Syndrome between MitoAction, AllStripes and Cure MITO Foundation that will help you become research ready. @MitoAction @_allstripes #mito #leighsyndrome #mitochondrialdisease
1
4
1
15
Take a few minutes of your Friday to learn about mitochondrial encephalomyopathy, lactic acidosis and stroke-like episodes (MELAS), a rare genetic mitochondrial disorder. @MitoAction
1
2
1
6
Our very own @reeniemccarthy will be giving the keynote presentation at the Digital Mitochondria-Targeted Drug Development Summit on April 27-29. To register and learn more about the conference, click here: ter.li/i8kgs3
Change is uncomfortable and hard as hell. When leaders expect others to change without participating + holding themselves accountable - it’s almost impossible. When leaders show up and model the vulnerability required for transformation change - it’s often unstoppable.
58
1,534
248
6,039
I had my first “Emma’s Choice” donation for Another Helping & chose for it to go to @Eaglefire_Dept! Thank you, Eagle Fire Department, for all of the work that you do, & thank you to everyone who has donated so far so I can #Bake4Mito & raise awareness for #MitochondrialDisease!
New #webinar: "Driving Cures for Rare Diseases: The Role of Patient Nonprofits in Engaging Industry and Academic Researchers to Accelerate Drug Development” on March 31 at 2:30pm ET. #raredisease #RDCADAP #drugdevelopment Register: bit.ly/30AU1Yj
Another Helping is ready to #Bake4Mito & help those impacted by #MitochondrialDisease! Learn more about #Mito, Another Helping, & my support of the community on my website. Anyone can help! Pick up your cupcakes locally (Boise) or donate them to a cause! mitoaction.org/join-the-caus…
1
4
2
10