Mitoaction Inc

MitoAction has been instrumental in our FAOD community. The team consistently goes above and beyond to link our families together for support. They also link our families to medical professionals, creating a space where we can have a healthy dialogue and share knowledge. This team is incredible. My family is truly blessed to have them as a part of our community.

Mitoaction has really embraced the FAOD community and given us a place to exchange information and become connected. They are constantly hosting webinars and conferences to support the patients, caregivers and wider medical community. The Mitoaction staff is also so passionate and helpful. They are constantly pushing boundaries and trying to find new ways to serve the community.

I was born with VLCAD. My family and I have struggled for many years to find the right doctors, resources and people to help me live my life normally. Mitoaction has done amazing work by bringing together a network of people with similar conditions and different life experiences. They have connected me with new specialists, exposed me to new treatments, and allowed me to make companions with others who are also dealing with the same condition. Together we have been able to empower each other while also sharing different life experiences that give each other insight on better ways to manage our conditions. Mitoaction has completely changed my life and made me more optimistic for the future. I am confident that they have done the same for countless other people.

I am excited for their next conference as it contributes to both FAODs and the entire field of genetics!

About 1-1/2 years ago I was diagnosed with Mitochondrial myopathy. I had no idea what to do, what this was, and my family was not supportive of me.

MitoAction provided me with a support group where I have made some close friends that I keep in touch with, share the highs and lows of our lives, and provide a virtual shoulder to cry on and cheer for.

The organization is full of information that helps me understand this invisible disease.

Mito Action has been instrumental in coming to terms with dealing with a mito diagnosis. Every person involved with Mito Action has been truly helpful, caring and understanding with no judgement. They are constantly trying to update their resources to better help the mito community.

I am a patient affected by mitochondrial disease. This disease is one of the most complex and challenging diseases on the planet and leaves patients feeling desperate for answers and support, and fighting feelings of disconnection and isolation from community. Mito action is such an amazing life-giving resource to our community. Every aspect of mito action from the team who operate it, to the resources they provide for our community, to the great impact they achieve through tireless advocacy is all just top of the tier!
Personally, my life would not be the same without this organization and all their great efforts every day!

Thank you MitoAction!!

~April Arguin,
Patient Advocate

MitoAction is a true patient advocacy organization for families impacted by mitochondrial disease. Many are aware of what they do to support the mito community as a whole but there is so much more they do behind the scenes to support individuals.

Mito action has not only helped me but my family as a whole. I have Mitochondrial Disease and when I was 13 my parents were running out of options for my healthcare and I was getting sicker, until they reached out to mito action, and mito action supplied them with a list of specialists to help. My parents picked a specialist from their selection, and I gradually got better under the doctor they recommended care. I could never thank Mito action enough. I am 20 now and Mito action continues to help me by giving me support, resources, ext. Mito action has made my battle with Mitochondrial Disease easier. Amazing organization

MitoAction provides a vital link for medical providers, patients and caregivers. They have specialized support groups, educational materials, scholarships, and so much more. This is a grass-roots non-profit with so much heart. The staff and volunteers are hard working, creative and committed to the Mito community. One of the most special things that happened to me personally, was the ability to meet virtually with. other people from around the world with the same mitochondrial disorder. As an older individual with a rare disease this was a huge life changing gift. I have much to thank MitoAction for, but this by far was one of the most memorable experiences I've had in a long time.

I am a licensed clinical medical social worker supporting families with rare diseases. When one of my family's is diagnosed with a mitochondrial disorder, I share your website information and encourage them to reach out to MitoAction when they are ready. I also use the website for my own education and growth to continue to support my families to the best of my abilities. Thank you for your website and the people in your organization that do such great work, day in and day out. Sincerely, Kelly Fisher, LCSW.

I feel welcomed and know that I have real true support. It helps me know I am not alone in my journey and that is very meaningful to me. They are amazing and always so helpful. Appreciate everything they do.

I was introduced to MitoAction at my sons doctors office. He was diagnosed at 4 years old and we saw a pamphlet for the MitoAction walk. We signed up and our journey with them began. They are a great support team. They offer great insight into Mitochondrial Disease. They give us great resources to help us in our journey. The support they offer is for both my son and us. They gave us great guidelines when he was in school. Now he is 25 years old and he joins the mito mens groups which he finds very support and helpful in guiding him in his journey. MitoAction a support group that is there for families and patients that are trying to navigate there daily lives with Mitochondrial disease

I initially became involved with MitoAction by reading and benefiting from their social media posts/comments. One thing led to another, and I got myself very involved. There was a MitoAction-Energy in Action podcast episode about my diagnostic journey and life with CPEO+ and from there I became the permanent host of the podcast, Energy in Action. In between all these 'cool' experiences, I've become close with women that have made a lasting imprint on my heart. They care about me, and I know they have my back. They've pushed me and helped me to educate myself in new ways. One example of this is encouraging me to reach out to a woman named Rachel who lives in NYC. MitoAction thought we would be able to relate well to each other. Rachel is now a highly valued woman in my life. She is a friend who I share so much of myself with. Stephanie Harry has encouraged me to continue the thought process on talking to my kids about my mitochondrial disease. Up until this point I've been a complete closed book on the topic with my kids. She has helped me to see things in new ways when it comes to talking to my kids. They are currently working to find me a nutritionist to help ensure I am doing the very best for myself when it comes to diet. I can't say enough good things about this organization. MitoAction has provided a light in my very dark life.

Excellent organization. They are respectful, caring, and very hands-on. Provide meaningful education and support. If you are undergoing a work-up for or have been diagnosed with a genetic metabolic or mitochondrial disease, please reach out to MitoAction!

MitoAction has been an incredible resource and help to me on my mitochondrial disease journey. After my diagnosis, I found this nonprofit that ran a support group. After getting up the nerve to call in, I let it all out. During an unfathomably difficult time, the team at MitoAction was there to listen, support, and help. It was the beginning of a beautiful and ongoing partnership and relationship. I love the collaborative nature, the supportive environment, and the various ways for patients and caregivers to interact. I'm very thankful for the partnerships that have been made, the work that's being done, and the support that's provided to those impacted my mito, and for their families. The day-to-day journey can be so daunting and difficult, and the importance of the work that MitoAction does to support others cannot be understated. I appreciate the MitoAction staff, the board, and especially the CEO, Kira Mann. Second to none!

Every person I have talked to at MitoAction has been so understanding and non-judgmental. They are a breath of fresh air!!

I’m a Mito mom and now a Volunteer for MitoAction! I found MitoAction at the end of December 2021. I cannot even begin to tell you how much of a blessing this organization has been for me and my family. I have two children with Leigh’s disease. My daughter is nine years old and my son is six. They are my heroes, they inspire me everyday with their resilience. They have a mild form of the disease and their specialist is predicting little to no progression, based on all of the information medically that he has now, but they still struggle with day to day tasks that most people would take for granted, which as a mother, is extremely difficult to watch. It's hard being a parent in general, but when your child is sick with an illness that you can’t just stick a bandaid on, the helplessness that you feel is profound and life altering. Before I found MitoAction, I felt like no one understood me or what I was dealing with. After I found MitoAction, I not only don’t feel alone, but most importantly, I feel as though I have found my purpose, my true north for what I am supposed to do with my life. It's not the way I expected my life to go, but I am now motivated to really change things for my children as they learn to navigate this life with this disease. MitoAction has changed my life and I know it will change yours!

My daughter has mitochondrial depletion syndrome and MitoAction has been an enormous resource. We listen to every podcast to learn more and to bring hope that there may be a cure one day. I also share links with people in our daughter's life so they can understand more about her condition.

Mitoaction is a great resource for patients and clinicians!

When I received my clinical diagnosis of Mito, I had so many questions. I was fearful and uncertain of how to handle all of the challenges mitochondria disease throws your way. I am so thankful for Mitoaction 411 because without it, I would have fallen into deep depression and felt totally alone. I cannot begin to tell you how helpful and wonderful this group is. The support and information I receive on a weekly basis has been invaluable for me to be able to cope everyday. The moderator of the call has a wealth of information, knowledge, and personal experience. She is so generous with sharing her time and resources and energy to help all of us navigate this very difficult and complicated disease. Thank you so much for this wonderful organization! God bless you

MitoAction helps so many families, it was great to see first hand the impact that was made directly to those who needed it.

MitoAction has been a huge support for our family through our medical journey. They are a great resource for medical information and offer a great phone support group .

Mitoaction is a great free resource for families facing Mito - a rare genetic disease. Since this disease is so rare, Mito patients rarely meet another person with mito and feel alone. MitoActoin has support group via phone, webinars, socials and other events that bring mito people together! They also have pages and pages of easy to understand info about this disease.

Amazing organization for resources and assistance!

Mitoaction has been an incredible resource to our family. We appreciate their hands on support of the mito community as well as their collaborative efforts with the medical community. Their resources are fantastic!

I suffer from adult onset disorder of the Mitochondria. It developed suddenly and I began to lose weight rapidly. I was told the permanent malfunction of the cell was due to either a bacterial or viral infection, or exposure to an environmental or ingested toxic chemical. The breakdown of cell function was evident in a special fresh and frozen muscle biopsy performed by C.I.D.E.M. labs at Case Western University and Cleveland Clinic to explore function at the cellular level. Having “Mito” means the cells can no longer produce enough energy to keep body systems functioning. Every system is affected, and the brain being the most sensitive, suffers the most. Since the break is permanent, each time an affected cell replicates, it replicates with the malfunction. Therefore it is a degenerative, progressive disorder for which there is no cure. Mine has no specific name, just Complex III and IV, along with a fatty acid oxidation disorder. I take a cocktail of supplements which help tremendously and above all, “Listen to my Body”!
Since it requires extra energy for one’s body to rid its self of toxins, serious reactions may take place with exposure, such as:
1. Chemicals in the food chain, like pesticides, preservatives, artificial coloring, chemicals used before during and after fresh fruit or vegetables are sold will cause severe gut pain, skin rashes, joint pain and can cause muscle weakness, breathing problems, neurological malfunctions that mimic stroke symptoms, cardiac irregularities, inability to walk, swallow, read, speak, tremors, muscle twitching and severe intractable head and spine pain.
2. Toxins (pesticides sprayed for pests , cleaning supplies, beauty care supplies, perfumes, chemical lawn fertilizers, air fresheners, cigarette smoke, detergents, etc. ) from the environment cause similar symptoms, but usually include more severe rashes and vomiting.
3. Tap water used for showing/bathing has been known to cause severe reddening of my skin from head to toe, difficulty breathing and cardiac irregularities. The symptoms subside after anywhere from 15 minutes to 1 hour.
I have learned to manage this disorder by decreasing the man-made toxic load one encounters daily, as follows:
1. Buy only organic food, vegetables and fruit from farmers I know. Drink triple filtered water and raw milk as well as organic certified juices. Smoothies save my body energy and are packed with dense nutrition.
2. Make my own shampoo, body cream and cleaning agents from natural substances certified as organic.
3. Use triple filtered water from tap to drink and double filtered to bathe.

When toxins build up, either from the cells inability to clear or a build up from unavoidable environmental agents encountered, I become too weak to walk, speak, swallow foods, breath and my para-sympathetic nervous system goes haywire (dysautonomia). Increased fatigues, both physical and mental, also occur. In the past these symptoms required hospitalization. I had a port implanted in my chest, in order to gain venous access at home. This permits large amounts of IV fluids containing added supplements to be administered to help promote cell function and flush out toxins. This may be done 3 -7 consecutive days. I typically require this IV therapy two to three times a month. I also learned to make a mean smoothie when my gut decides to slow to a crawl, which has helped me keep my weight up.
Before I was correctly diagnosed, many physicians felt I had a mental illness. I requested a thorough psychiatric work up at a large teaching hospital. It showed mental function within normal limits. With the psychiatric component off the table, I was labeled with multiple misdiagnoses by at least forty different specialists at approximately six different medical institutions in three different states. I lost my health, my livelihood as a nurse and my spouse of 30 years left me. My retirement funds vanished as medical bills piled high. Life felt empty and destroyed. I had a choice to make. Live miserably or find a new purpose. Hospice helped tremendously and I helped them by supplying educational information from MitoAction. “In chaos is opportunity”, so I filled the void with advocacy for the mentally ill, the incarcerated, our environment and as a volunteer with MitoAction helping others understand this terrible disorder.
Avoiding toxins means never eating out or having a meal someone else prepared. It means never being around pesticides. It means being much more isolated from family and friends because toxic substances now surround us everywhere. Toxic off-gasses from my grandson’s new beach ball, or a new mattress topper, couch, rug, even pillows can cause symptoms to flair. I wonder if I am “the canary in a cave”.? Are there more of us “Adult Onset Mito” folks around because of what we’ve done to pollute our environment and food chain?
One thing I am sure of, without the support of MitoAction I would not have made it through the first few years. With their support and teaching tools, my health has actually improved, my weight is normal again and I am able to enjoy Tai Chi and Qigong at least a few times a month. Caring for myself under my doctor’s direction and the help of Hospice gives me a sense of control over my health and has kept me out of the hospital many times. For that, I am most grateful!
Lisa Kavanaugh
Oberlin, OH

From day one when we first heard the word “mitochondria” in relation to our sweet child’s health, Mitoaction has been there. For support, for education, for connections... Mitoaction leads the field in patient engagement. We are very thankful for the willingness to share info on mitochondrial autism and for their mito 411 resource.
A great group of staff and volunteers!

Mitoaction is an organization that exists to help meet the needs of those with Mitochondrial diseases. These diseases are so rarely heard of that most medical professionals are ill equipped to adequately diagnose or treat them. Symptomatic patients often reach out to Mitoaction with questions and support needs and are then seamlessly routed to a number of avenues to meet their needs. Their online presence is robust; with a website that includes everything from available Doctors who treat Mitochondrial Disease, the latest up-to-date advances in research and trials and hints on how to navigate appointments. They offer weekly support teleconferences with topics that cover the needs of all those with Mitochondrial Disease.
Mitoaction offers a 24 hour hotline 'Mito 411', a message can be left and a volunteer returns the call to offer support and answer questions. The Executive Director authored the book 'Living Well With Mitochondrial Disease', a book that explains Mitochondrial Disease in an easy to understand fashion. Mitoaction also has a presence on Facebook with a membership of well over 4,200+ and growing. It is here that you are able to see their impact; with many questions asked daily and responses galore it is evident the need there is for this organization. They have provided information and empowered their members, and those members are now able to support newcomers in need. I can think of no better run organization than one who equips members to help others by pointing them to the tools provided by Mitoaction and the forums by which we can offer mutual emotional support while living with such a dreadful disease.

Hello, my name is Stephanie and Dr Fran Kendall is my doctor. I met with her in October of last year and received the clinical diagnosis of adult onset mitochondrial dysfunction. She told me of this support group and it has been an invaluable resource to me ever since. Because I had been sick for so long and puzzled about so many symptoms that I was , this group was a Lifeline for me! I remember the first time I called in I was so amazed at the compassion and knowledge of the hostess of the teleconference, Mary Beth Hollinger. She is incredibly knowledgeable of this disease and has such a heart of compassion . She and the group were so insightful and helpful and surrounded me with support and caring. I look forward to this Friday afternoon support group every week. You could say it's my lifeline! And the Physicians and researchers and developers thatMitoAction 411 features, gives us so much hope for our future as we deal with this disease. The people in the Mito community are so fortunate to have this wonderful resource! Thank you!

Stephanie Pearce

It was a long struggle to find the correct diagnosis for my health difficulties, so many doctors told me they didn't understand what was causing my problems. Mitoaction was my only support at the start as NORD and other foundations had no knowledge of mitochondrial disease. Knowing that at last I could speak with informed dedicated professionals and other individuals who could help me sort out the treatments best suited to my health issues saved my quality of life from a housebound, perhaps even bedridden, wife, mother, artist, to a functioning, contributing woman. When my local doctors struggled to address my complications, I could find the information they and I needed at Mitoaction. When my specialist's clinic closed I found assistance at Mitoaction. When new problems arise I can network with patients across the U.S. to knit a possible solution from the discoveries of medical facilities I can never reach. They keep me informed of new researchand progress of clinical trials, which I find so very encouraging. Thank you, Mitoaction, I can never repay you.

This has been a wonderful outreach and source for knowledge. With a disease with so many unknowns it's nice to have each other. Thank you.

Mitoaction has played a huge role in supporting my family and I as we've struggled through the diagnosis of five of my family members. The information on their website as well as their phone conferences and phone support has helped me put many pieces together for myself and my children!