Announcing our New MitoAction Website

You may have noticed that our website looks different.... After a year in the making, we are excited to bring you a brand new, updated website! All of your favorite content from the old site is still there, with many new features and updated content.


Click the links below to locate some of your favorite resources:


If you need help with the new site, you have questions or suggestions, please email us at info@mitoaction.org and we will be happy to help you!

Check back often as we continue to add more features and new content to help you navigate your journey with mitochondrial disease.

We hope you enjoy the new www.mitoaction.org.
New Mailing Address
Patient & Family Support
MitoSantas Fulfills Christmas Wishes
Bringing smiles to the faces of children affected by mitochondrial disease and easing the stress of parents during this holiday season!

Christmas can be a very stressful time for Mito families. Children are often sick and the budget is tight for many parents who have to juggle co-payments, doctor visits and those extra costs for their kiddos. These kids deserve some extra happiness and their parents deserve some stress relief.

This is where MitoSantas comes in! MitoSantas purchase gifts for children affected by mitochondrial disease and their siblings. Parents will complete an application for each child indicating their Christmas wishes. Our volunteers then work one on one with each family to help make their Christmas wish come true!
Enjoying Halloween with your Family
Halloween is a big day for many families – decorations, costumes, parties, trick or treating and family and friend gatherings now hallmark the day!  Halloween, however, is often a bit scary for families with kids with chronic illnesses, including mitochondrial disease.

We’d like to share some tips to keep Halloween safe for your family and to keep all the scary goblins away!

Education
Patient Education Forum with Dr. Jerry Vockley

Join MitoAction for an afternoon to learn more about mitochondrial disease and fatty-acid oxidation disorders, network with others who are facing the challenges of living with this rare disease, and ask questions of leading experts in mitochondrial disease care.

There are a limited number of $100 travel scholarships available for this event! Please RSVP below to be directed to the scholarship application.

If you’re traveling from out of town and require hotel accommodations, we have reserved a block of rooms at the Residence Inn Pittsburgh University Medical Center. Please click  here   to reserve your room at the rate of $129/night.   The last day to book your room at the group rate is Monday, October 28, 2019.
Get Connected with MitoAction Mobile

Join MitoAction's CEO, Kira Mann and Karen's CEO, Dave Williams as they walk you through step-by-step to get started using the MitoAction Mobile platform. This tool will help you manage your day-to-day with mito and help us learn more about the daily challenges you face with this rare disease.

The updated MitoAction Mobile includes all of the new features you asked for:

  • Simple automation of symptom and vital tracking
  • HIPAA-compliant storage space for your digital health files
  • Easy sharing of health information with family and friends
  • Incident and event reporting in real-time
  • Easy-to-read charts of all tracked items
Upcoming Events
Join our host, Stacy Meyers in Rochester, NY on October 27, 2019 as she helps spread awareness and raise funds to support the MitoAction community. Stacy’s dad, Todd and uncle, Jesi both lost their battles with mitochondrial disease. Her eight year old neighbor, Katelin is also affected by this devastating disease.

Stacy asks that you join in and help support families like hers and Katelin’s, who face the daily challenges of life with this rare disease.
Mito in the News

Reneo Pharmaceuticals has initiated a clinical study in the U.S. for patients with fatty acid oxidation disorders.

Click here for more information!
Mitochon publishes new abstract " A mitochondrial uncoupler prodrug protects dopaminergic neurons and improves functional outcome in a mouse model of Parkinson’s disease."

Click here to read more!

Alexion and Stealth Biotherapeutics Announce Agreement for Option to Co-Develop and Commercialize Late-Stage Therapy for Mitochondrial Diseases.

The full press release can be read here.
Ultragenyx Pharmaceutical Inc . RARE announced that the FDA has accepted for review the New Drug Application (NDA) for pipeline candidate UX007 (triheptanoin) for the treatment of long-chain fatty acid oxidation disorders (LC-FAOD).

Click here for the full story!
Help us become a top-rated NonProfit!
If you love our work then tell the world! Your stories about MitoAction's work will help us make an even bigger impact in the mito community.

GreatNonprofits – the #1 source of nonprofit stories and feedback – is honoring highly regarded nonprofits with their 2019 Top-Rated List.

Won’t you help us raise visibility of our work by posting a brief story of your experience with MitoAction?

It’s easy and only takes 3 minutes! Click here to get started!