Thank you!
Thank you to everyone who joined in these last few weeks to support our events. Every one of our signature events had to be adapted this year to comply with Covid-19 restrictions, but despite those changes, they have all been a huge success!
Virtual Energy Walk
Participants of the virtual Energy Walk were located all across the globe even as far as Turkey! Teams came up with so many ways to #moveformito, from hiking to biking, to playing badminton. We are so grateful for your support. A special thank you to our amazing sponsors, Zogenix and Zempleo! Remember, there is still time to participate if you haven't had a chance! Don't forget to tag us on social media. If you earned a prize for fundraising, a member of our team will be contacting you next week to confirm shipping!
Syracuse Energy Walk
Thank you to everyone who participated to make this event such a success. Whether you registered for the event, bought raffle tickets, made a donation, volunteered, or purchased rocks, you allow MitoAction to continue to offer free programs and services to families impacted by mitochondrial disease. If you earned a prize for fundraising, a member of our team will be contacting you next week to confirm shipping!
Matthew Harty Golf Outing
In it's 7th year and during a pandemic, this was the best year yet for the Matthew Harty Golf Outing! Over $30,000 was raised to help send kids with mitochondrial disease to summer camp and to award scholarships to college students with mito! All this would not have been possible without the support of our very generous sponsors: Commonwealth Motors, The Karr Family, Fuel for Fire, The Russell Family, HHH Property Services, Chartwell Investment Partners, Law Offices of Peter Radulski, The Rogers Family, Frank Drake, The Artone Family, The Gore Family, Talent Retriever, The Benvenuto Family, TSR Athletics, The Rogers Family, The Leahy Family, New England ENT, Robert Provenzano, Associated X-Ray, Barbara Grasso, The Higgins Family and McAloon's Liquors!
Mitochondrial Disease Awareness Week
This year's awareness week was so much fun and we appreciate you all for joining in to help us #tacklemito!

To listen to the mito community call with special guest Kyle Bryant of the Two Disabled Dudes, click here.

To view the Tackle Mito Community Video, click here.
During these unprecedented times of COVID-19, MitoAction would like to help you stay safe and would like to invite you to join us to mask up for mito with us! 

Click here to order your MitoAction masks! Visit our website for assistance in navigating COVID-19 and mito!
Patient Support
Since 2009, MitoSantas has been putting smiles on the faces of children impacted by mitochondrial disease on Christmas morning! Christmas can be a very stressful time financially for mito families and MitoSantas would like to help relieve some of that stress by purchasing gifts ($50 limit per child) for the affected child and any siblings age 18 and under. Applications are due by October 31st and spots are limited, so please get your applications in early. One of our volunteers will contact you if your family is selected to shop the items on your child's wishlist.
We know that you have questions and are searching for answers. MitoAction is here to offer you support, education, and useful resources. Our Mito411 volunteers are available to support and offer experience that only comes from someone on your same path.

Reach us by phone at (888) MITO-411
or by email at
or schedule one-on-one support by clicking here!
*MitoAction does not provide medical advice*
Whether you need help managing your mitochondrial disease symptoms or if you care for someone with mitochondrial disease, MitoAction mobile is here for you. Welcome to the first and only HIPPA compliant digital health platform (website and mobile app) specifically for managing life with mitochondrial disease.

MitoAction Mobile will help you manage mitochondrial disease each step of the way by allowing you to:

  • Track current mitochondrial disease symptoms and treatments to see what works and what doesn’t
  • Access and view past health history on demand
  • Manage future appointments and tasks, to avoid obstacles and triggers

What you get when you join:

  • Your Mito Daily Journal reminders to track your current mito symptoms, recommended by top thought leaders in mitochondrial disease research. These can be customized just for you and added as they happen in real-time.
  • The MitoAction Community is a place for you to connect with other members of the mitochondrial disease community.
  • Your My Health Journal to add all of your past and future health history files, like past lab results, so you can access them anytime, anywhere and share them with members of your care team.
  • Real-time charts so you know what is working and what isn’t. Share these charts with your doctors so they see your mito experience.
  • A calendar to coordinate future activities, tasks, appointments, and medications so all care gets delivered, nothing falls through the cracks, and others can help you when needed.
Our weekly support calls are a safe and confidential place to connect with other families impacted by mitochondrial disease, share stories, ask questions and offer and receive support.

Upcoming Mito Support Call Dates:
  • October 23rd - 12:00pm EST
  • October 30th - 12:00pm EST

To participate in the mito support calls, call the toll-free teleconference number 1-866-414-2828, then enter the participant code: 017921#

Upcoming FAOD Support Call Dates:
  • November 12th - 7:00pm EST
  • December 10th - 7:00pm EST

To participate in the FAOD support calls, RSVP here!
Education & Awareness
Our monthly educational webinars feature guest speakers addressing topics important to the mito community, giving patients and families unprecedented access to leading clinical experts.

If you missed our October Mito Expert Series presentation with Dr. Irina Anselm, you can now listen to it on our website and podcast channels.
On September 14, 2020, Mitochondrial Medicine, a Frontier Program at CHOP held a virtual mitochondrial medicine symposium. If you weren't able to attend, you can now view the recordings from the event.
Join us for the 2nd annual Energy Walk & 5K - Rochester!

Even though this year looks a little different, we are still excited for a fun and engaging event. Rally together your friends and family and create your team, then choose a day to walk, run, bike, or just get together for a photo to raise awareness of mitochondrial disease.
Now, through the end of the year, you can still gather your family and friends and come together to raise awareness and #moveformito! No matter how you participate, you are making a difference in the lives of patients and families who are impacted by mitochondrial disease. Don't forget to check out the prizes you can earn by fundraising! Email us at for help in organizing your event!
Research & Clinical Trials
Have you heard of Aromatic L-amino Acid Decarboxylase (AADC) deficiency?
Signs and symptoms of AADC deficiency usually appear in the first year of life. Infants with AADC deficiency may have weak muscle tone and feel like a floppy baby with poor head control when held. Parents have reported that their affected children have trouble feeding, startle easily, and have difficulty sleeping. Children with AADC deficiency may also experience episodes in which their eyes roll toward the back of their head or to the side; they may arch their back and become rigid and very irritable.

To learn more and to get in contact with a PTC Patient Advocate, click here.