Mitochondrial Disease Terms
As you navigate your journey with mitochondrial disease, there are many terms that come up that are unfamiliar. To help you better understand the terminology, we have built a glossary on our website of frequently used terms related to mitochondrial disease!

MitoAction Podcasts
We have now made our Monthly Mito Expert Series presentations available to listen as a podcast. Click below to listen on iTunes, Google Podcasts or Spotify!

Newly Diagnosed & Undiagnosed Support Calls
Join MitoAction on Wednesday evenings at 7:00pm EST for a support call just for those that are newly diagnosed with mitochondrial disease or navigating the journey of a diagnosis.

Ultragenyx Announces U.S. FDA Approval of Dojolvi™ (UX007/triheptanoin), the First FDA-Approved Therapy for the Treatment of Long-chain Fatty Acid Oxidation Disorders
“With today’s FDA approval, patients living with this serious, unpredictable, and often catastrophic disease now have an approved therapy. Many patients with long-chain fatty acid oxidation disorders have difficult lives with frequent hospitalizations and major medical events despite the best current care. Now these patients have an approved treatment as an option to help manage their disease,” said Camille L. Bedrosian, M.D., Chief Medical Officer of Ultragenyx. 

The Matthew Harty Scholarship was established in 2015 to honor the life of Matthew Harty, a North Andover, MA, boy who passed away from mitochondrial disease just days after his 8th birthday. 

The Matthew Harty Scholarship is awarded each year to high school seniors or currently enrolled college students with a diagnosis of mitochondrial disease.

Congratulations to this years recipients!
Kyle Mast
Hobart & William
Smith College
Katie Parsons
Kennesaw
State University
Kayla Goodman
Lake Erie
College
Jenna Sultes
University of Michigan - Dearborn
Katherine Chung
Towson
University
Mckevor Tatum
Middle Georgia
State University
Krystella Barroso
California State
University - Monterey
Josiah Scheller
University of
Evansville
Madeline Nadrich
St. John
Fisher College
Jenna Bremer
Grace College &
Theological Seminary
Emma Ryan
College of
the Canyons
Anthea Xenakis
Arcadia
University
Abigail Ander
State University of
New York - Brockport
Ali Hamadeh
Florida Atlantic
University
Patient Support
Get the 411 - the Mito411 !

Calling 411 used to be the way to get information. Wanted to know a phone number: call 411. Wanted to know an address: call 411. Wanted to know the weather: call 411!

Now, if you want to know about mitochondrial disease and how to manage it: Call  Mito411 ! Have questions about your new diagnosis of mitochondrial disease: call  Mito411 !

Last month we supported over 50 families with questions and concerns regarding how to live with mitochondrial disease. Our group of volunteers have a combined 45 years of experience working with mitochondrial disease. We work hard to support you and find answers or resources to help you live the best life possible.

Our highly knowledgeable volunteers are able to provide resources to address a variety of topics:

  • Fatigue, muscle weakness, exhaustion
  • MitoCocktail
  • Safety issues 
  • Education and workplace troubleshooting
  • Tips for providing quality care
  • Recommendations for finding quality care providers
  • Strategies to reduce caregiver stress
  • Someone who knows how you are feeling and can be supportive to you
  • Referrals to local community programs and services

Reach us at (888) MITO-411 or mito411@mitoaction.org
*MitoAction does not provide medical advice*
The power of the MitoAction Mobile platform allows you to keep track of your care day-to-day and helps the community learn more about this rare disease. Track your symptoms, medications, events – anything that is relevant to decisions made about your care so that you can provide your clinicians with the specific details they will need to make the most informed decision for  YOU . No more trying to remember what happened last month, last week, or even just yesterday. 

We’ve adapted MitoAction Mobile to provide a more user-friendly experience and we hope that will encourage you to take advance of this platform, now more than ever.

Here’s all you need to do:

  • Visit our website to sign up for MitoAction Mobile. Once you sign up, you will receive an email with a link to download the App.

  • Download the most recent version of MitoAction Mobile on your phone. You will see the icon for our MitoAction Mobile partner Karen as the app image on your phone.

  • When you login, you will see a new Daily Journal that is pre-loaded with the most common symptoms. Tomorrow, you will start receiving reminders throughout the day to track your symptoms. 

  • To customize your Daily Journal, use your same login credentials to access the desktop version of MitoAction Mobile. This Quick Start Guide will lead you step-by-step to make these customizations.

  • We have also developed a COVID-19 Daily Journal to help our community track symptoms you may have that could be related to exposure to COVID-19. 

Many more features are available and you can find  Quick Start Guides to give you the full power of MitoAction Mobile. Let us help you take control of your care and help clinicians and researchers learn more about this rare disease.
Spend an hour with MitoAction every Friday (with the exception of the 1st Friday of the month when we host our   Mito Monthly Expert Series   Zoom webinar) at 12:00pm EST for our weekly support calls!

These toll-free teleconference support calls create a safe and confidential place to connect with others with mito. Parents, spouses, caregivers, and adults on the mito journey are welcome to call in each week to share their experiences, ask a question, and offer and receive individualized support.

To participate, call the toll-free teleconference number 1-866-414-2828, then enter the participant code: 017921#
MitoSocials help families connect with other mito families in their local communities. These low-key, relaxed gatherings allow mito families to meet each other, share stories, give and get support, and realize they’re not alone on this journey. Due to COVID-19 and the safety of our patients and families, we have transitioned to a virtual format offering the same level of support.
If you would like to host a virtual MitoSocial in your area,
email info@mitoaction.org.
MitoAction Offers COVID-19 Relief Grants to Families
Recently, MitoAction was awarded the Continuity of Care RARE Patient Impact Grant from Global Genes to benefit the Marcel's Way Family Fund. This grant allows us to offer financial assistance for expenses accrued to members of the mito community as a result of COVID-19. Guidelines are slightly different than that of our regular Marcel's Way Family Fund grants and can be found on our website.
Education & Awareness
There is still plenty of time to register for the upcoming International Metabolic Conference for families affected by fatty acid oxidation disorders. We are so excited to share with you all of the fantastic speakers and activities we have lined up - click here for the full agenda.
Our monthly mito expert series educational webinars feature guest speakers addressing topics important to the mito community, giving patients and families unprecedented access to leading clinicians.

Advanced registration is required for all 3 presentations!
July 17, 2020
Dr. Mary Kay Koenig
August 7, 2020
Gena Padgett
September 11, 2020
Dr. Rebecca Ganetzsky
Advocacy
As many of you know, mitochondrial disease and metabolic conditions were initially listed on the CDC’s guidelines as conditions that were considered at high risk for serious complications from COVID-19.

In May, when the country started to make plans for re-opening, our disease groups were left off the guidance documents, and the mitochondrial disease patient population no longer was afforded the designation of being at risk. This deletion left many of our families completely uncovered and potentially challenged when considering the choices of staying home or returning to work/school.

Stephanie Tomlinson, Mito 411 Coordinator and MitoMom, Maria reacted on your behalf and worked with policy makers, infectious disease specialists, educators and the CDC to have those guidance documents changed to accurately reflect our populations. As of June 24th the CDC is now recognizing mitochondrial disease and metabolic patients at high risk for complications.

Click here to view the updated list!
Events
Stay tuned to your inbox, our website and the MitoAction 5K & Energy Walk Facebook Page for details on our virtual event! We hope that you will join us as we #moveformito and raise awareness of mitochondrial disease world wide!
Join us for the 2nd annual Energy Walk & 5K - Syracuse!

The Payne Family has a very special reason for hosting an Energy Walk in their community -- their 9-year old daughter, Caroline, is affected by mitochondrial disease and they would like to invite you to join them to help support families like theirs, who everyday face the challenges of this rare disease.
Patient Survey Opportunity
Mitochondrial Disease/Syndrome Interview
Patient Pillar Advocates is looking to interview caregivers or patients with a mitochondrial disease or syndrome. Participants will be compensated for their time. US residents only.