Recent News
MitoAction is making wishes come true!

For a few months, we've been talking about our new partnership with Give Kids The World in Florida...well, we are SO excited to announce that we are now accepting nominations for wish trips that will take place 2022! These trips will provide the wish child and their family a one-week, cost free vacation where they can laugh, play and create priceless memories away from hospital visits and medical procedures.

Click here to visit our website for qualification criteria and the nomination form!
Help us get the mito community research ready!

MitoAction has teamed up with AllStripes and Cure Mito Foundation to create a research database that will accelerate drug development in MELAS and Leigh Syndrome to power research studies.

Your experience is important and can help researchers advance treatments for the community. By joining this partnership, you can contribute to multiple research efforts without leaving home! Click here to learn more!
It's that time of year, applications are now open for this year's MitoSantas program! MitoSantas volunteers purchase gifts for children ages 18 and under affected by mitochondrial disease and their siblings ages 16 and under. Parents complete an application for each child with their likes and holiday wishes. Our volunteers then work personally with each family to shop for the gifts on their wishlist! The application deadline is November 15th!

Click here to apply for your child.
Patient Support
Mito411 offers live, one to one support, education, advocacy, and a direct connection with someone who understands. Mito411 volunteers speak with callers needing support and share similar experiences on how to live day to day with mito. The personal connection can really help during the long and often difficult road associated with mitochondrial disease. We want you to know that you are never alone on your journey!

Remember that you can also chat live with a member of the MitoAction support team to get your questions answered! From any page on our website, during regular business hours, click the "LIVE CHAT" button in the lower right corner to be connected to someone!

Reach us by phone at (888) MITO-411
or by email at mito411@mitoaction.org
or schedule one-on-one support by clicking here!
Whether you need help managing your mitochondrial disease symptoms or if you care for someone with mitochondrial disease, MitoAction Mobile is here for you. MitoAction Mobile is the only HIPPA compliant digital platform specifically for managing the mitochondrial disease lifestyle while also providing critical data to clinicians and researchers in their quest to develop therapies.

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
Weekly support calls are a safe and confidential place to connect with other patients, caregivers, patients and families impacted by mitochondrial disease, share stories, ask questions and offer and receive support.

Upcoming Mito Support Call Dates:
  • October 15th - 12:00pm EST
  • October 22nd - 12:00pm EST
  • October 29th - 12:00pm EST
  • November 12th - 12:00pm EST
  • November 19th - 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
MitoSocials help connect families with other mito families. These low-key, relaxed virtual gatherings allow mito families to meet each other, share stories, give and get support, and realize they’re not alone on this journey. We want to help you get support closer to home, and are hopeful that a MitoSocial will offer just that.

Visit our website to keep updated as new virtual MitoSocials are added regularly. We are currently scheduling MitoSocials for the fall & winter months - email us at info@mitoaction.org to get your area on the calendar.
Join Mito Warriors, Jamie Buryanek, Gordon Freedman, and Adam Johnson for a support call just for the men in the mitochondrial disease community. Spend an hour connecting with others who can relate to your day-to-day.

Upcoming Men's Support Call Dates:
  • October 17th - 1:00pm EST - 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.

Upcoming Monthly Expert Series Presentations:
  • October 8th - 12:00pm EST: The Mito Cocktail Revisited - Clinical Pharmacist, Ted Toufas - RSVP here.
  • December 3rd: 12:00pm EST: Resetting for the Holidays: Family Yoga Session - Marcelle Longlade
  • January 7th - 12:00pm EST: 2022 Mito Town Hall Meeting

Prior presentations can be listened to in our SpotifyGoogle PodcastsAmazon MusiciHeartRadio and iTunes podcast libraries as well as on ouwebsite.

If there are topics that are important to the mito community that you'd like to learn more about, please email us at info@mitoaction.org.
Programs
MitoAction's podcast series, Energy in Action consists of conversations with patients, families, researchers and thought leaders in the mitochondrial disease communities. These podcasts give you a glimpse into the lives of families affected by mitochondrial disease and the latest in clinical trials, diagnosis, research and the advancement of therapies. 

We're excited to share our new series, Parents as Rare, hosted by the 'Dadvocate,' Adam Johnson. Click here to listen to the trailer!

New episodes will be released bi-weekly in our SpotifyGoogle Podcasts, Amazon Music, iHeartRadio and iTunes podcast libraries as well as on our website.

If you would like to be a guest or suggest a topic, please email us at info@mitoaction.org.
Fatty Acid Oxidation Disorder (FAOD) Forum
These support calls create a safe and confidential place to connect with others with FAOD. Parents, spouses, caregivers, and adults on the FAOD journey are welcome to join in to share their experiences, ask a question, and offer and receive individualized support.

Upcoming Fatty Acid Oxidation Disorder (FAOD) Support Call Dates:
  • October 14th - 8:15pm EST
  • October 28th - 1:00pm EST
  • November 11th - 8:15pm EST
  • December 9th - 8:15pm EST

To participate in the FAOD support calls, RSVP here!
INFORM will hold the 2021 virtual conference on October 27-28. Keynote speaker Emil Kakkis (M.D., PhD.) will discuss 'Rare Diseases and the Development Space.'

The objective of the conference is to familiarize the audience with recent advances in the diagnosis and treatment of fatty acid oxidation disorder and of the carnitine cycle. Each year, this international meeting will discuss the proper diagnostic interpretation of laboratory testing, development of new therapeutic strategies, and the role of newborn screening ​in preventing complications. Top researchers in the field such as our Co-Chair and Scientific Organizer, Jerry Vockley, will be there to discuss the latest fatty acid oxidation research.

Register here.
Events
October 10, 2021
Franklin Park Zoo
October 17, 2021
Cheektowaga Park
October 23, 2021
Churchville Park
If you would like to host your own event, there is still plenty of time to get started. Email us at info@mitoaction.org to learn more and begin planning!
Advocacy
We need you to raise your voice about an important legislative issue!

The Medical Nutrition Equity Act (Senate Bill 2013 and House Bill 3783) is bipartisan legislation that will guarantee all health insurance plans cover medically necessary nutrition for a specific set of digestive disorders, inherited metabolic disorders (ie PKU and FAODs) and inherited disorders of mitochondrial functioning.  

This important federal legislation was reintroduced to both the Senate and House of Representatives this summer and we need your help to get it passed!  This legislation will help reduce healthcare costs in our community. 

This bill is narrowly focused and guarantees insurance coverage of important items in our community such as medical formula (ie monogen, lipistart, and portagen) and special vitamins/supplements prescribed by doctors (ie components of your "mito-cocktail").  

Click here to learn how you can raise your voice on this important issue!
Research & Clinical Trials
This is a single-arm study to evaluate safety and tolerability of oral IW-6463 in adults diagnosed with MELAS.

A Study to Evaluate Efficacy and Safety of Vatiquinone for Treating Mitochondrial Disease in Participants With Refractory Epilepsy (PTC743 -- MIT-E).
A Study of the Efficacy and Safety of 24 Week Treatment With REN001 in Patients With Primary Mitochondrial Myopathy (STRIDE)
If you are living with a type of LC-FAOD, you may be interested in a new study sponsored by Ultragenyx in partnership with PicnicHealth, a digital health company.