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Nobody Fights Alone...Reach out to us!
We want to remind you to take care of YOU!
Mito411 - Connect with support from those who can relate to the diagnosis journey and the challenges of living with mitochondrial disease. Email Mito411@mitoaction.org or call 1-888-MITO-411 (648-6411).
Mito Memories Group - This is a closed Facebook group (all are welcome to join) that was created as a safe place for people who have lost loved ones to mitochondrial disease. We are here to support, uplift and provide resources.

To join the group: MitoAction Memories Group

Find your WAE Founder Bernie Murphy shares tips for self care with MitoAction
So often when we think of the term self-care , we think of taking care of our appearance, like going to the gym or exfoliating our face. Seldom do we ever consider that the most important form of self-care is within us! It’s an opportunity to visit your “spiritual gym” while “exfoliating” the cluttered mind. The mind wants to hold you hostage; telling you all the things you need to worry about and all the things you can’t do. 

Yet the more time you spend in stillness, the more you quiet the overbearing mind and begin to hear the tiny whispers of your heart. The heart is where your peace and possibilities exist. The more you listen to your heart, the more you see the beauty in the simple moments of your life. When you start your day by visiting your "spiritual gym," you show up better for everyone else in your life! It’s not selfish...it’s selfless ! Flex those self-loving muscles and make some time for you! 

Here are some simple ways to begin the process...
  1. As soon as you wake up-reflect on your blessings in life. Remember what you are grateful for before the day begins. 
  2. Get a journal and take a few moments each morning before you start your day and write down your thoughts. 
  3. Light a white candle. The color white reminds you that each day is a blank white canvas for you to add your color to. Look at the flame as it’s very calming. 
  4. Say a prayer or a positive affirmation to start your day uplifted. 
  5. Breathe! Breathe! Breathe! Inhale the peace and exhale the junk! 
  6. Meditate-meditate-meditate. It does your body, mind and spirit good!  

Upcoming Support Calls
March 29th - Mitochondrial Disease Externally-led Patient-Focused Drug Development Meeting
April 5th - Expert Series with Dr. Fran Kendall
April 12th - Expert Series with Dr. Richard Frye
April 19th - Parent Support Call
April 26th - Adult Patient and Spouse Support Call
#Nice4Bryce Kindness Project

Do you know a mito patient experiencing an extended hospital stay or a family that could use some added cheer from the #Nice4Bryce Kindness Project?

Email Nice4Bryce@mitoaction.org and let us share Brycey's spirit of kindness with others!

To follow our acts of kindness , visit our Facebook page !
MitoAction Expert Series
Our monthly Expert Series, via toll-free teleconference, features guest speakers on topics important to the Mito community, giving patients and families unprecedented access to experts.

You can join by calling in toll-free at 866-414-2828 ; Participant code: 017921#
Friday, April 5th
Dr. Fran Kendall
"DTC Testing – Power and Pitfalls"

Dr. Kendall will discuss DTC testing, its strengths, limitations, studies and data surrounding follow-up confirmatory genetic testing completed in patients with variants identified in DTC testing.  

Click here for more details.
Friday, April 12th
Dr Richard Frye
"Primary Mitochondrial Disease and Secondary Mitochondrial Dysfunction: The Importance of Distinction for Diagnosis and Treatment"

Dr. Frye will discuss his recently published paper outlining the difference between primary mitochondrial disease and secondary mitochondrial dysfunction.

Click here for more details.
Patient Education Forum
Click here to RSVP!
Mitochondrial Disease Externally-led Patient-Focused Drug Development Meeting
MitoAction is thrilled to partner with UMDF and the Muscular Dystrophy Association to host this Externally-led Patient-Focused Drug Development meeting for the mitochondrial disease community on  March 29, 2019

For the mitochondrial disease community, this meeting is the first opportunity for a group of patients, families and other caregivers to speak directly to the FDA, and to share their experiences in their own words. It is also the first time a report on the patient experience will be completed and shared with the FDA. This input can inform FDA’s decisions and oversight both during drug development and during review of a marketing application. We need YOUR participation to make sure our collective community voice makes a positive impact. Whether you attend in person or online, let your voice be heard!

Click  here  to register for the webinar!
MitoAction Mobile App
Let the MitoAction Mobile App help you take control of your care.

1.Create a digital binder of past, current and future medical records. No more lugging pounds of paper with you to your doctors appointments. You can drag and drop files right from your desktop or add files directly from your mobile device. The best part is, you control who has access to your files.

2.Track symptoms or incidents and their impact in real-time.

3. Add appointments to your HIPAA compliant in-app calendar.

4. Set reminders to take medication, complete care tasks and track symptoms.

5. View and share care history reports with family, caregivers and doctors.

6. Have a private text message conversation with your family, doctor, and nurses about your care.

Click here to start using the MitoAction Mobile App today! Or for more information email kira@mitoaction.org
MitoAction Events
Matthew Harty Mito Classic Street Hockey Tournament
On April 9, 2019, in conjunction with MitoAction, families from the North Andover community will come together to support the 6th Annual Matthew Harty Mito Classic at the North Andover Youth Center.

The event is currently sold out, but we would love to have you come out and cheer on our teams and support the the Matthew Harty Camper Fund!

If you would be interested in hosting your own street hockey tournament, please email kym@mitoaction.org.

The 10th Annual Sandra K Russell Derby Day Benefit for Mito will be held on May 4, 2019 at Royale - Boston. Come enjoy the two most exciting minutes in sports, incredible auction items, southern fare, hat and bowtie contents, Boston's hottest DJ and more, all to benefit to programs and services offered by MitoAction!

Light the Sky Celebration
MitoAction's Nice4Bryce Kindness Project is excited to announce the 1st annual Light the Sky Celebration. Bryce's message of kindness and inspirational journey made him a hometown hero in his community.

The Light the Sky Celebration is a night to highlight the hometown heroes that have made an impact in their own communities. We will come together for one night to dance, celebrate and spread the message of kindness.

Please join us on June 21st, 2019 at the Holiday Inn in Taunton, MA. We look forward to lighting up the sky with you!

For more information, email jamie@mitoaction.org.
Join us on September 15th, 2019 for our 15th Annual Energy Walk and 5K at DCR's Mother's Rest in Boston, MA. Enter a team, register to walk or run or volunteer.

Birdies for Bryce Golf Tournament
Join us Monday, September 16th, 2019 for The 2nd Annual Birdies for Bryce Golf Tournament at Crestwood Country Club and help raise money for the Nice4Bryce Kindness Project.

More details coming soon!
Matthew Harty Golf Tournament
The 6th Annual Matthew Harty Golf Tournament will be held on Monday, October 7, 2019 at the North Andover Country Club to help raise money for the Matthew Harty Camper Fund and Scholarship Funds.

Fore more information, email kym@mitoaction.org.
We are headed to Seattle on October 20, 2019 for the 4th Annual Capes4Cal 5k. Join Cal and the mito community as we continue to battle the Mito Monster and raise awareness of this rare disease!

Host Your Own Event
There are many ways you can get involved to support the programs and services that MitoAction provides free of charge to the mito community.

You could host a walk or 5K, choose MitoAction and your charity when running a marathon or organize a restaurant night, to name a few.

We can provide you with ideas or you can create a personalized fundraiser of your own.


Please email Kym at k ym@mitoaction.org  if you have questions, ideas, or would like to join the cause.
"This is Mito" Video Series
Would you be interested in sharing your story to help us spread awareness? Mit oAction is looking for p atients, families and caregivers willing to share your journey with mitochondrial disease and how it has affected your day to day life.

If you would be interested in telling your story, please email Kira at kira@mitoaction.org.
Mito Socials & Mito Playdates
Let us help you plan your own Mito Social or Playdate!
Mito Socials help our families connect with other mito families in their local communities. These low-key, relaxed 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 Mito Social will offer just that. Consider hosting or attending a Social!
Mito Playdates offer a wonderful opportunity for local children and families to connect in person, share experiences and for the kids to just be kids.

Whether at a library or school these informal gatherings allow the children and their families to develop meaningful relationships with others in their area, extending the community of support.
If you're interested in hosting a Mito Social or Mito Playdate, email Jamie at jamie@mitoaction.org
Thank you for your support!