MitoAction's first International Metabolic Conference was a huge success! Thank you to all of our sponsors and speakers, we couldn't have done this without you! Over 350 attendees represented more than 8 countries. It was an inspiring 3 days full of hope, knowledge, community and connections. This is only the first step in our continued commitment to support the FAOD Community. If you missed the conference or would like to listen to the presentations, they can be found by clicking here.
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Kendra Scott is celebrating MitoAction for National Non-Profit Day and we hope you can join! We're kicking off the festivities on August 17th at 5:00pm with a virtual happy hour and styling session, so come check out the latest gems from our fall collection as you raise funds for MitoAction.
If you aren't available to join the happy hour and would like to just shop, enter code GIVEBACK8434 at kendrascott.com on Aug. 17-18 and 20% of your purchase will be donated back to MitoAction!
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During these unprecedented times, patients and families have many questions about the potential risks of Coronavirus, especially as communities consider reopening workplaces, schools, and other activities. The Mitochondrial Medicine Society has issued a statement to provide some direction during these times.
Read the full statement here.
For more resources and help navigating COVID-19, visit our website! |
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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? Our Mito411 volunteers are ready and available to help guide you, listen and comfort you and connect you to valuable resources, so you know you are never alone.
Reach us by phone at (888) MITO-411
or by email at mito411@mitoaction.org
or schedule a one-on-one call by clicking here!
*MitoAction does not provide medical advice*
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If you're already using the MitoAction Mobile platform and have questions or if you would like to get started, you can now book a 30-minute one-on-one training session with MitoAction's CEO, Kira Mann who will help to ensure you are utilizing MitoAction Mobile to it's fullest capacity. If you haven't downloaded the app yet and are ready to better manage your care, click "get started" below!
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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 Support Call Dates:
- August 14th - 12:00pm EST
- August 21st - 12:00pm EST
- August 28th - 12:00pm EST
- September 18th - 12:00pm EST
To participate, call the toll-free teleconference number 1-866-414-2828, then enter the participant code: 017921#
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MitoSocials allow families to connect with other mito families to 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.
Upcoming MitoSocial Dates:
- September 17th - 7:00pm EST - Join us to celebrate Mitochondrial Disease Awareness Week no matter where you live!
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If you would like to host a virtual MitoSocial in your area,
email info@mitoaction.org.
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MitoAction Offers COVID-19 Relief Grants to Families |
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As we start to think about going back to school and remote learning....is there a device that could help your child be more productive or make their work easier while learning from home? Technology is one of the things this grant could cover!
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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 both presentations below.
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September 11, 2020
Dr. Rebecca Ganetzsky
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October 2, 2020
PTC Therapeutics
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Join the cause to help us 'tackle mito' and spread awareness of mitochondrial disease this September! Mitochondrial Disease Awareness Week is the third week of September and during this week, MitoAction and mito families all over the world do their best to educate others about this rare disease.
More details will follow in the coming weeks!
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International Mito Patients (IMP) Announces the inaugural LHON Awareness Day! |
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A group of LHON patients, their parents and representatives from mito organizations around the world will participate in a Facebook Live event. The event will involve live chats exploring life with LHON, different diagnostic journeys and care provided as well as inspirational stories of how this group has overcome challenges and been determined not to let LHON stop them! Paula Morandi, LHON patient advocate in Italy and across Europe helped organize this event. IMP encourages the global LHON community to raise awareness in their local communities and to join the inaugural 'LHON: One Condition, Many Stories.' |
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Energy Walk has gone virtual this year! While it may look a little different, we are still excited for a fun and engaging event to close out Mitochondrial Disease Awareness Week! We hope that you will join us as we #moveformito and raise awareness of mitochondrial disease world wide!
You will have chances to earn amazing prizes along the way and no matter how you choose to participate (walking, running, biking, swimming, etc.), you’re making a difference in the lives of patients and families who rely on us. Help to show our community that even during these uncertain times, we are still powerful and still strong!
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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.
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Research & Clinical Trials |
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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.
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