Register to attend the Autism Parenting Summit
Join the Autism Parenting Summit and learn how to help your child THRIVE.
- If you’re parenting a child or young person on the autism spectrum…
- If you’d like to learn new strategies from expert speakers, including Dr.Temple Grandin, Dr. Debra Moore, and Dr. Annette Nunez…
- If you’d like to find ways to give your child the best start in life…
Then the Autism Parenting Summit is for you!
There are 18 expert speakers ready to share new tips and techniques
that help with various issues such as behavior, communication, and sensory issues, health, bullying, transitioning to adulthood, and so much more.
You are not alone in your parenting journey.
Register here at no charge and join the community on April 20-21!
|
|
MitoAction has partnered with Hear Your Song to allow our mito kids and teens (ages 6-18) to write and record their own song — no prior musical experience required! All you need is an idea! You can write a song about your family and friends, things you love, struggles you may face – anything you want to use music to share!
There are still open spots for songwriting sessions! Click here to schedule your session! * Enter MitoAction for the question that asks "How did you hear about Hear Your Song"*. Visit our website to learn more about the program! |
|
Our 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.
If you would like to be a guest or suggest a topic, please email us at info@mitoaction.org.
|
|
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!
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
|
|
Our 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 Mito Support Call Dates:
- April 16th - 12:00pm EST
- April 23rd - 12:00pm EST
- April 30th - 12:00pm EST
- May 14th - 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
|
|
Join Mito Warriors Jamie Buryanek, Gordon Freedman, and Adam Johnson on Sunday, April 18 at 1:00pm EST for a support call just for the men in the mitochondrial disease community. Spend an hour talking about your challenges and victories along your journey and discuss ideas about moving forward as a community.
|
|
Our virtual 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. If you'd like to see one in your area, please email us at info@mitoaction.org. |
|
Our monthly educational webinars feature guest speakers addressing topics important to the mito community, giving patients and families unprecedented access to leading clinical experts.
|
|
MitoAction's CEO, Kira Mann will be presenting on Utilizing Technology to Better Understand Mitochondrial Disease & the Patient Journey at the Mitochondria-Targeted Drug Development Conference in April.
Click here to learn more and see the full agenda! |
|
Our new Another Helping initiative launched in mid-March and is off to a great start! In just a few weeks, 11-year old Emma, whose dad is affected by mitochondrial disease, was able to raise almost $700 for MitoAction! Each quarter, Emma chooses a different program to support - this quarter is the Matthew Harty Camper Fund which sends kids with mitochondrial disease to summer camp!
Visit our website by clicking here to learn more about Another Helping! |
|
Fatty Acid Oxidation Disorder (FAOD) Forum |
|
Our virtual 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:
- April 22nd - 3:00pm EST
- May 13th - 8:15pm EST
- May 27th - 3:00pm EST
- June 10th - 8:15pm EST
To participate in the FAOD support calls, RSVP here! |
|
|
|
International Metabolic Conference |
Save the date for the 2nd annual International Metabolic Conference hosted by MitoAction & INFORM for families affected by fatty acid oxidation disorders. Visit our website and Facebook Page to stay updated on conference details! |
|
The INFORM 2020 Symposium is available on-demand through the end of April at no cost! Listen to presentations to hear some of the latest research in fatty acid oxidation disorders from researchers across
the globe.
Email us at info@mitoaction.org for your coupon code!
|
|
|
National Organization for Rare Disorders Appoints Minnesota Ambassador |
MitoAction's Patient Support Coordinator, Stephanie Tomlinson was recently appointed
as an ambassador for the State of Minnesota by The National Organization for Rare Disorders (NORD) and its advocacy arm, the Rare Action Network (RAN).
Click here for the full press release! |
|
In the spring of 2020, the Matthew Harty Mito Classic had to go virtual due to COVID. At that time, we pivoted to a fully virtual initiative, Move For Mito! The support of the Move for Mito initiative was so positive that we are bringing it back for 2021!
The entire week of April 11th – April 17th, we will be MOVING FOR MITO!!
Click here to visit our website and see all of the fun ways that you can participate from wherever you live!
|
|
Join us live on May 1, 2021 and "Get in the Race for Mito" at the 12th annual Sandra K. Russell Derby Day Benefit for Mito!
|
|
Although this year's event will look a little different as we transition to a virtual event, you can expect all the excitement from years past...Kentucky Derby inspired cocktails, big hats, flashy bow ties, unique raffle and auction items, and the most exciting two minutes in sports, all from the comfort of your home!
Click here to get your tickets!! |
|
Check out the MitoAction Store! Grab your favorite classic designs and check out some new ones!
Do you have a design idea? Send it our way, as we are always looking for new items to offer!
|
|
|
Research & Clinical Trials |
|
|
|
A Study to Evaluate Efficacy and Safety of Vatiquinone for Treating Mitochondrial Disease in Participants With Refractory Epilepsy (PTC743 -- MIT-E).
PTC Pinpoint is a program that provides genetic testing and counseling for people who may have AADC deficiency.
|
|
|
|
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.
|
|
|
|
|
|
|
The objective of this research study is to conduct a pivotal phase 3 trial of treatment with the investigational drug dichloroacetate (DCA) in young children with deficiency of the pyruvate dehydrogenase complex (PDC).
|
|
|
|
Khondrion recently announced that it received a rare pediatric disease (RPD) designation from the United States Food and Drug Administration (FDA) for sonlicromonal for the treatment of patients with MELAS syndrome.
|
|
|
|
|
|
|
This is a Phase 3, prospective, multicenter, open-label treatment study of the efficacy and safety of MT1621 in patients with thymidine kinase 2 deficiency (TK2d). In order to be eligible for this study, participants must have genetic confirmation of TK2d and must not have ever received MT1621 or nucleos(t)ides before entering the study.
|
|
|
|
A Study of the Efficacy and Safety of 24 Week Treatment With REN001 in Patients With Primary Mitochondrial Myopathy (STRIDE)
A Prospective Study of the Disease Characteristics of Adult Patients With LC Fatty Acid Oxidation Disorders (FORWARD)
This is a Phase 1, open-label, multiple-dose study of the safety and tolerability of 2 dose levels of REN001 in subjects with fatty acid oxidation disorders (FAODs) with confirmed mutations in the Carnitine palmitoyltransferase II deficiency (CPT2), Very long-chain Acyl-CoA dehydrogenase deficiency (VLCAD), Long-chain 3-hydroxyacyl-CoA dehydrogenase deficiency (LCHAD) or Trifunctional Protein Deficiency (TFP).
|
|
|
|
|
|
|
|
|
|
