Save the date to join us on November 30th to celebrate #GivingTuesday and the national day of giving. This year, all funds raised will allow MitoAction to grant wishes to children with mitochondrial disease by either providing Christmas gifts through our MitoSantas program or sending them on a wish trip through our Matthew Harty Wishes program. Stay tuned to your email and our website for additional details in the coming weeks! |
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MitoAction is making wishes come true!
Nominations are still being accepted for wish trips to Give Kids the World Village in Orlando, FL! These trips will provide the wish child and their family a once in a lifetime Disney experience 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!
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It's that time of year, applications are being accepted for this year's MitoSantas program! MitoSantas provide 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 personally work with each family to shop for the gifts on their wishlist! The application deadline is November 15th!
Click here to apply for your child.
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We are thrilled to continue our partnership with Hear Your Song to offer our mito and FAOD kids the opportunity to create a custom holiday song / holiday greeting (you can also create a non-holiday song if you'd prefer). The kids who have gone through this process have had such a fun time putting their feelings into a song - no previous song writing or musical experience is required! If you're interested in holiday songwriting, the deadline is November 30th! |
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We are proud to announce that our CEO, Kira Mann was nominated for a Global Genes RARE Champions of Hope award this year! Tune in to the virtual watch party on Facebook on Thursday, November 18th at 7:00pm EST to celebrate with the rare disease community.
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MitoAction and AllStripes have partnered to create research databases that will enable new MELAS and Leigh Syndrome research projects! We’re looking for patients/families willing to contribute their de-identified medical records to make this effort as strong as possible.
AllStripes is a platform that makes it easy for rare disease patients and caregivers to contribute to treatment research from home. Participate by signing up at allstripes.com/melas or allstripes.com/leigh and the AllStripes team will collect the records on your behalf, at no cost, and extract insights to power research. The more we know about mitochondrial disease, the more we can do for mitochondrial disease patients.
By participating, not only are you helping to move research forward, but you will also receive your medical record history to help better manage your care.
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Join MitoAction, Cure Mito Foundation and PTC Therapeutics on Wednesday, December 1st at 12:00pm EST for an exclusive webinar discussing the history of clinical research in Leigh syndrome, and the evolution of the PTC-743 & MIT-E Study!
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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!
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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:
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Track current mitochondrial disease symptoms and treatments to see what works and what doesn’t
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Access and view past health history on demand
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Manage future appointments and tasks, to avoid obstacles and triggers
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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:
- November 19th - 12:00pm EST
- December 10th - 12:00pm EST
- December 17th - 12:00pm EST
- January 14th, 2022 - 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
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Are you feeling stressed about the holidays? Contact us at info@mitoaction.org to schedule a virtual MitoSocial to connect with other families who might be feeling the same way! Visit our website to keep updated as new virtual MitoSocials are added regularly. |
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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:
- November 21st - 1:00pm EST - RSVP here.
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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:
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December 3rd: 12:00pm EST: Stress Relief for the Holidays: Family Yoga Session - Marcelle Longlade - RSVP here!
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January 7th - 12:00pm EST: 2022 Mito Town Meeting - RSVP here!
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.
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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. On the 3rd Wednesday of the month, listen in for Parents are Rare episodes, hosted by the 'Dadvocate,' Adam Johnson.
Upcoming Energy in Action Episodes:
- November 17th: Parents as Rare - Nathan Peck
- December 1st: The Patient Teacher Program - Jake Thoe
- December 8th: Steve Smith's Journey with Mito
If you would like to be a guest or suggest a topic, please email us at info@mitoaction.org.
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Fatty Acid Oxidation Disorder (FAOD) Forum |
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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
- December 9th - 8:15pm EST
- December 23rd - 1:00pm EST
- January 13th, 2022 - 8:15pm EST
To participate in the FAOD support calls, RSVP here! |
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Join FAOD parents, Beth Folcher and Stephanie Harry on Thursday, November 18th at 7:30pm EST to explore nutrition and substitutions for stress-free meal-planning that's inclusive of the whole family. You do not have to sacrifice flavor for good nutrition. Roll up your sleeves and prepare for a cooking adventure!
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On December 7, 2021 at 7:00pm EST, join Ultragenyx Pharmaceutical for their Patient Webinar Series where you can learn more about LC-FAOD, hear from experts and connect with others. December's topic is: Practical Ideas for Diet and Food Selection in LC-FAOD and is intended for individuals diagnosed with CPT I, CACT, CPT II, VLCAD, TFP and LCHAD.
Click here to register. Registration will close one day prior to the program. |
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Energy Walk season has officially ended! We were so excited to get back to in-person events and spend the day with our mito families. Click below to view photos from our new Boston Energy Walk location - The Franklin Park Zoo!
If you're interested in hosting an Energy Walk in your area in 2022, please email us at info@mitoaction.org and let's get planning now!
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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! |
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Research & Clinical Trials |
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This is a single-arm study to evaluate safety and tolerability of oral IW-6463 in adults diagnosed with MELAS.
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A Study to Evaluate Efficacy and Safety of Vatiquinone for Treating Mitochondrial Disease in Participants With Refractory Epilepsy (PTC743 -- MIT-E).
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A Study of the Efficacy and Safety of 24 Week Treatment With REN001 in Patients With Primary Mitochondrial Myopathy (STRIDE)
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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.
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