Stay Updated on News and Mito Matters
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It's almost time to celebrate this year's Global Mitochondrial Disease Awareness Week, September 16 - 22, 2018. Awareness week is a time for our worldwide community to raise our voices and share the importance of understanding the scope and impact of mitochondrial disease. Every voice makes a difference!
Visit our Awareness Week website page for graphics to share on social media and to find ideas about how you can participate in your own community.
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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
9:00 am - 10:00 am - Registration
10:30 am - Runners begin
10:45 am - Walkers begin
10:50 am - Food, fun and activities
(Games, inflatables, characters,
photo booth, face painting, DJ and more!
We are excited to have DJ Brek.One, the official DJ of the Boston Celtics as our MC for the day! You don't want to miss out on the fun and helping us to spread awareness of mitochondrial disease.
Start a team, join a team, participate as an individual or as a virtual walker/runner!!
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Online registration for the Energy Walk closes on Friday, September 14th at midnight EST. Onsite registration opens at 9:00 am - 10:00 am at the event.
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Capes 4 Cal 5K
Sunday, October 21, 2018
Green Lake Park
Seattle, WA
Join mito superhero Cal as we walk to raise awareness about mitochondrial disease. In its third year, the Capes 4 Cal 5K is an incredible day of fun and festivities. Grab your cape and register today!
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MitoAction will host a series of Patient Education Forums to provide the community with an opportunity to learn about recent developments in mitochondrial disease from leading experts across the country and provide families with an opportunity to network and connect with one another. We hope to see you at an upcoming event!
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Other Upcoming Patient Education Forums
October 13, 2018 - Gainesville, Florida
Dr. Richard Stacpoole
Dr. Tanja Taivassalo
November 3, 2018 - Pasadena, CA
Dr. Richard Boles
December 1, 2018 - Scottsdale, AZ
Dr. Richard Boles
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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.
September 29th
- Dr. Amel Karaa - Updates on 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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The next
Let's Talk Mito
call, formerly MitoCafe, will take place on Tuesday, September 18. Join MitoAction and the Foundation for Mitochondrial Medicine for conversations about developing effective communication with your medical team members. Share and receive tips and ideas about how to ensure that you are your or your loved ones best advocate for medical care.
To participate, call the toll-free teleconference number
1-866-414-2828,
participant code 017921#
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PATIENT AND FAMILY SUPPORT
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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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MitoAction's Director of Patient, Support & Advocacy, MaryBeth Hollinger, RN, MSN,
"I am honored to work with other passionate healthcare professionals who have devoted their lives to the health and well being of others. Educating and spreading awareness of mitochondrial disease with other health care professionals is needed to more fully understand the impact of this disease on children and adults."
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