MitoAction to Co-Host
2020 International Metabolic Conference
On July 24 - 25, 2o20, MitoAction will partner with the Organic Acidemia Association to co-host the 2020 International Metabolic Conference at the Wyndham University Center Hotel in Pittsburgh, PA.
The focus of this conference is to educate families with Organic Acidemia and Fatty Acid Oxidation Disorders on the medical management, nutrition and social needs of caring for themselves or a loved one with this chronic rare metabolic disorder. It is a great opportunity for families to share stories and support one another, along with having one-on-one time with professionals in the field.

To receive more information on the conference, click here .

Learn more about sponsorship opportunities for the conference.
Mito Warrior Wednesday
Meet Leslie-Ann! We recently featured Leslie's story for Mito Warrior Wednesday. Leslie is 1.5 years old with a rare form of mitochondrial disease: PDHA1 (E-1 Transporter) . Her parents said, "Leslie-Ann is a strong-willed, robust and beautiful girl! We are thankful for everyday we have with her!"
To view the videos of our past Mito Warriors, click here . If you are interested in sharing your story, email .
Patient Support
Are you feeling alone on your journey with mitochondrial disease? Do you have questions about your or a loved one's symptoms and living day-to-day with this rare disease? Call the Mito411 support line and we will be there to support you as you navigate this difficult road. Call 1-888-Mito411 to speak with one of our trained volunteers who will help guide you, listen and comfort you and connect you to valuable resources, so you know you are never alone.

Would you like to join MitoAction and support families who need it most? Become a Mito411 volunteer and make an immediate impact for families and individuals who need it most. For more information on volunteering, email
Take Charge With MitoAction Mobile
Kick off the New Year with a custom plan to help you manage your day-to-day with mitochondrial disease. The MitoAction Mobile platform will help you track symptoms, medications, appointments, ER visits and more. You can also manage your medical records using the digital binder feature, giving you access anywhere, anytime to critical medical information. To help you make the most of each doctor's visit, run a custom report to share what's happened since you last saw your physician. Take control of your care, while also helping clinicians and researchers learn more about mitochondrial disease. The MitoAction Mobile platform is HIPAA compliant and free to all members of the MitoAction community.

To access this state-of-the art platform to help manage your journey with mitochondrial disease, visit
Weekly Support Schedule
MitoSantas Fulfills Christmas Wishes
Thanks to the generosity of our sponsors, donors and volunteers, MitoSantas was able to provide Christmas gifts for more than 65 children this holiday season!

MitoAction recognizes that the holidays can be difficult, especially knowing the financial burdens some families endure. We are honored to help bring smiles to the faces of the children in our community during the holiday season!
Momvocates was created by mito moms for mito moms! Join us as we use our strength in understanding the complexity of raising and caring for a child with mito as we support one another and raise our voices to support the mito community. We are connected through our journeys with mito and we are committed to forging that bond to allow us to empower, provide a space to shine and support one another in the moments when we need it most. Momvocates will ensure you are never alone, in a way that only others facing the same challenges can because we LIVE IT!

Join Momvocates and let us help you incorporate “Me Time” in your day, and become a more engaged Mom, wife, caregiver and friend. We will share our journeys and uplift each other every step of the way.

Are you a Momvocate? Then, we welcome you!!!
Upcoming MitoSocials
If you would like to host a MitoSocial in your local community, email
Since 2015, the Matthew Harty Camper Fund has awarded 36 college scholarships to high school seniors or currently enrolled college students with a diagnosis of mitochondrial disease. Applications for the 2020-2021 are open now until May 31, 2020 !

Qualification Criteria

  • Must be a high school senior or currently enrolled college student.
  • Transcript and enrollment verification required.
  • Must include a letter of support from a physician or other healthcare provider who can verify the mitochondrial disease diagnosis and address the merit of the applicant.
  • One-page essay required.
  • Photo required with submission.
Education & Awareness
2020 Town Hall Meeting
If you missed our annual Town Hall Meeting, you can now listen online! You will hear from clinicians, pharmaceutical companies, patient advocacy groups and other members of the mito community about special opportunities, programs and projects coming up in 2020 for patients and families affected by mitochondrial disease.
Upcoming Events
Wear That You Care!
World Rare Disease Day is February 29, 2020 . Help us raise awareness about mitochondrial disease by hosting your own Jeans for Genes event!

Ask your employer, school, church, library, local store, etc. to support this effort by donating $5.00 to wear jeans on the day of your choice!
Kindness Sparks Change and Awareness
The Nice4Bryce Kindness Project was started in honor of Bryce Derosier, who through his battle with mito, inspired an entire community to not only rally behind his family, but to support one another. The Nice4Bryce Kindness Project continues in his memory by encouraging random acts of kindness, while spreading awareness of mito. Through this project, families and individuals with mito receive care packages, cards, meals, and more when they need it most to uplift them during the most challenging days.

February 28th is Bryce's 3rd birthday and the Nice4Bryce Kindness projects is asking you to join us in committing 280+1 acts of kindness in memory of Bryce for the month of February. Pleas share your acts of kindness on Facebook by using the hashtag #Nice4Bryce. Help us reach our goal of 280+1 to continue Bryce's legacy of kindness!
Ride in Style with Graceful Gears

On April 24, 2020, MitoAction will partner with Graceful Gears to offer mito patients and their families the chance to ride in a luxury car of their choice in Boston! Have you dreamed of the opp ortunity to take a ride in an exotic car? Well now you can!

Graceful Gears' motto is "Up-shifting Your Spirits". Their mission is to bring joy and happiness to individuals with a serious medical condition or special needs by riding in a car of their choice: Exotic, Super, Sports, Luxury or Classic Cars. MitoAction is excited to partner with Graceful Gears to bring this opportunity to the mito community!

Spots are limited so don't wait to register!
The 11th annual Sandra K Russell Derby Day Benefit for Mito will return to Boston's Royale on May 2, 2020. Get your hats and bowties ready - this is a celebration you won't want to miss!

Tickets will be available February 15.

Learn more about sponsorship or donating an auction item to SKR Derby Day.

See photos from last year's event.
Mito in the News
Entrada Therapeutics Announces ENTR-501 for the Treatment of Mitochondrial Neurogastrointestinal Encephalomyopathy (MNGIE).

Click here to read more!
PLEASE, join our TK2 Deficiency Registry and help take on mitochondrial disease at . This website is for Patients, Families, Caregivers and Health Care Providers. This is both an educational website with advocacy resources and we will use the website to communicate with the TK2d community.
New Mailing Address