Stay Updated on News and Mito Matters
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MitoAction Announces New Partnership with Care3
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MitoAction and Care3 are excited to announce a groundbreaking global innovation partnership focused on advancing the knowledge of and delivery of care for mitochondrial disease. This partnership will include the launch of a new app this summer! To read the full partnership announcement click
here
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Join in the fun and help us spread awareness for mitochondrial disease. Take part in one of our upcoming events by forming a team, registering to walk/run, volunteering and more!
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Sunday, September 16th, 2018
DCR's Mother's Rest
South Boston, MA
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MitoAction Energy Walk & 5K
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Capes 4 Cal 5K
Sunday, October 21, 2018
Green Lake Park
Seattle, WA
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Team MitoAction Runs the San Francisco Marathon
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Team MitoAction will run the San Francisco Marathon powered by RUN365 in San Francisco, CA on July 29th! Choose your distance - Full Marathon, 1st Half Marathon, 2nd Half Marathon, 5K or Ultramarathon.
Together, we will raise funds and awareness for mitochondrial disease. Are you willing to take on the challenge? Email Shawney Lamm at
shawney@mitoaction.org
to secure your bib number.
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MitoAction Launches Mito Cafe with FMM
MitoAction and The Foundation for Mitochondrial Medicine (FMM) teamed up to provide our first new joint program, Mito Cafe. This new program will provide patients, caregivers and community members the opportunity to join facilitated discussions and exchanges on topics related to managing the day-to-day issues of a complicated, chronic illness.
The first Mito Cafe held on June 19th, focused on the patient voice in clinical trials. Future topics will range from advice on school accommodations and managing an IEP, to preparing to go to college, managing heat intolerance and nutrition, among others.
Check the MitoAction website for updates on upcoming topics and dates for the next Mito Cafe.
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Monthly Mito Expert Series
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Our monthly educational webinars and podcasts feature guest speakers on topics important to the Mito community, giving patients and families unprecedented access to leading clinical experts. Join us for an upcoming presentation or
visit our full library of presentations.
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2018:
September 29th
- Dr. Amel Karaa - Learn more about the Mitochondrial Care Networks
October 5th
- Dr. McGuire - Learn more about his clinical study (the MINI project) and immune system research
To join, call 1 (866) 414-2828 and enter caller code- 017921#, 12pm EST, 9am PST.
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MitoAction Joins Miracles For Mito for Patient Event
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Families came together to learn about recent developments in mitochondrial disease and to connect with others who are facing the challenges of this rare disease.
While the adults were engaged in discussion, facilitated by Dr. Austin Larson from Children's Hospital Colorado, the kids worked on Father's Day crafts.
To learn more about our upcoming PEF's visit
www.mitoaction.org/calendar.
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Patients Making a Difference
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Mito Warrior, Sheridan Johnston, has partnered with Maine Hempworks to create a lip balm. Maine Hempworks believes in giving back to the community. Purchase the Vanilla Chai lip balm and all proceeds will be donated to MitoAction.
Sheridan states, "
It took me years to realize that being disabled didn’t have to diminish the impact I have in this world. I try to bring awareness to mitochondrial disease wherever and whenever I can and hope that one day we will find a cure."
Click
below to purchase a lip balm and support MitoAction!
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First Friday:
Open discussion (noon EST)
Second Friday:
Newly diagnosed patients and parents (noon EST)
Third Friday:
Support group for parents (noon EST)
Fourth Friday:
Support group for adult patients and spouses (noon EST)
Quarterly (Tuesdays):
Autism-Mito Task Force (12:30 EST)
To participate, call the toll-free teleconference number 1-866-414-2828, participant code 017921#
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Mito Socials and Mito Playdates offer a wonderful opportunity for local families to connect in person, share experiences and to give and receive support. Whether at a local park or cafe, these informal gatherings allow families to develop meaningful relationships with other families in their area, further extending the community of support.
Mito Social and Mito Playdates are led by local volunteers with the support of the MitoAction staff. If you are interested in hosting a Mito Social or Playdate contact us at
info@mitoaction.org
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Sandra K Russell Derby Day Benefit for Mito
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On May 5th 2018, MitoAction held the 9th Annual Sandra K Russell Derby Day Benefit for Mito. Over 260 people attended the event which was held in a new venue, Boston’s Royale. The night was filled with Derby festivities, including: silent auctions, sensational outfits, and Southern Fare.
With the support of our amazing sponsors and attendees, MitoAction was able to raise over $175,000 which will allow 32 families attend a worry free weekend at Victory Junction Camp, offering them the opportunity to escape the daily challenges of living with mitochondrial disease.
Thank you to everyone who supported this year's MitoAction Derby Day event.
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The Schmid Family, with the help of MitoAction, hosted a Mexican themed fundraiser on May 5th, 2018. The event, held in Marshfield, MA, aimed to raise funds to support Abby Schmid, who will run the Falmouth Road Race this coming August. Abby runs in honor of her son, Thomas, an eleven year-old battling mitochondrial disease. The Schmid family raised over $5,000 and the event was a great success.
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