|
|
MHCF Scholarship
Applications for the
Matthew Harty Camper Fund Scholarship will open
February 1st!
Apply Online
| | | |
Friends Make the World Better | |
|
We would like to highlight a special book called, "Friends Make the World Better" written by a special mito warrior, Kendall, and her mom Taylor. Kendall and her mom wrote and illustrated this book in collaboration with her friends at Hickory Ridge Elementary School. This children's book is a beautifully illustrated poem about friends, and how to be a good friend. Although this book does not specifically discuss Leigh's Disease, Taylor and Kendall have used this book to educate others and raise awareness about mitochondrial disease. Since the pandemic has prevented them from having in-person fundraisers, they also hope that this book will help fund life-saving research for mitochondrial disease. Join us as we celebrate this special family and their accomplishment, and please check out their book below.
Read Taylor and Kendall's Book
To learn more about Kendall: click here!
| | |
|
|
2023 Mito Town Meeting
Didn't have a chance to attend our annual Mito Town Meeting? Click below to hear from MitoAction, along with our advocacy, pharmaceutical, and clinical partners as we share our accomplishments for 2022 and what’s ahead for the new year.
Watch Now
| | | |
Programs & Special Events | |
On January 22, the North Andover hockey community put on their 8th annual Matthew Harty Scholarship Fundraiser. They continue to honor the life of Matthew Harty, as well as rallying the community around Board President, Paul Harty, his wife, Sarah, and their family. This incredible event raised close to $4,000.00 in one evening! | |
|
Mito411 offers live, one-on-one support, education, advocacy, and a direct connection with someone who understands. The mitochondrial disease journey is long and often difficult, but we want you to know that you are never alone on this road - so please don't hesitate to reach out!
Reach us by phone at (888) MITO-411, by email at mito411@mitoaction.org or via the LIVE CHAT feature in the lower right corner of our website!
| |
|
|
Shades of Grief
Shades of Grief chronicles Frances Dougherty Kendall, M.D.’s walk through the complexities of death and dying and loss, grief, and hope. This personal journey begins with the loss of a beloved patient in Boston, the death of parents, her own cancer, and ends with recovery and hope. The various pieces are accompanied by her husband, Michael Kendall’s original photography, each photo capturing a component of the emotion of a given work to enhance the depth of feeling experienced.
The author was driven by her experience to provide a modicum of comfort, peace and joy through her words to many struggling with the most human of all experiences - grief. A fellow physician, Dr. Emma Neish, said of the manuscript, “It is so raw and honest and it beautifully captures the human experience of grief. I think a lot of people will relate to these words and I think they will be healing for many souls.”
| | | |
|
Whether you need help managing your mitochondrial disease symptoms or if you care for someone with mitochondrial disease, MyMito (formerly MitoAction Mobile) is here for you. MyMito is the only HIPPA compliant digital platform specifically created to manage the mitochondrial disease lifestyle, while also providing critical data to clinicians and researchers in their quest to develop therapies.
MyMito 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
| |
|
MitoAction is excited to announce that we are piloting two new special support times, alongside some super special volunteers!
Join us for “Our Space”: a space for young adults to connect and network with Mito and FAODs! These meetings will occur the second Wednesday of the month at 8:30pm EST. To register click here
Join us for “CPEO and Me” every 1st Thursday of the the month at 6:00pm EST! This is a special place carved out for individuals impacted by CPEO to share about their experiences. To register click here
| |
|
Upcoming Weekly Support Calls:
- February 3 - 12:00pm EST
- February 10 - 12:00pm EST
- February 17 - 12:00pm EST
- February 24 - 12:00pm EST
| |
Join MitoAction in our new monthly Expert Series called, "Wondering Wednesdays: Ask the Genetic Counselor" every 4th Wednesday of the month. | |
|
Our educational webinars feature guest speakers addressing topics important to the mito community, giving patients and families unprecedented access to leading clinical experts. Past presentations can be listened to in our
Spotify, Google Podcasts, Amazon Music, iHeartRadioand iTunes podcast libraries as well as on our website.
| |
|
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 as Rare episodes, hosted by the 'Dadvocate,' Adam Johnson.
New episodes will be released bi-weekly in our Spotify, Google Podcasts, Amazon Music, iHeartRadio and iTunes podcast libraries as well as on our website.
If you would like to be a guest or suggest a topic, please email us at info@mitoaction.org.
| |
|
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:
- February 9 - 8:15pm EST
- February 23 - 1:00pm EST
| |
If you have never connected with your congress person before, the process might seem a bit overwhelming! If you would like some one-on-one support and clearer direction on what to do, please don’t hesitate to reach out to Stephanie Harry at sharry@mitoaction.org. | |
Research & Clinical Trials | |
For the latest updates, and to search current clinical trials, visit our website. | | | | |
