#Nice4Bryce Kindness Project

Our newly launched #Nice4Bryce Kindness Project would like to wrap our arms around our community and families! Do you know a mito patient experiencing an extended hospital stay 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 Partners with VMP Genetics to Teach About Mitochondrial Disease
FACT!   Teaching about metabolic diseases in medical school and residency programs is poor.
FACT!   Most patients never receive a diagnosis, especially when the disease presents in adulthood.
FACT!   Patients cannot access effective therapies unless a proper diagnosis
is made.
FACT!   The sooner a diagnosis is made and treatment begun, the better
the outcome.

WE NEED YOUR HELP!
 
We are bringing patients and families into lectures and presentations – at conferences and in the classroom to share your day-to-day journey living with mitochondrial disease. “While doctors teach facts, patients tell stories. Story-telling is a more compelling teaching method with better recall over time than didactic lecturing. We also believe that doctors are more likely to make a diagnosis if they have already seen a patient and heard her/his story,” said Dr. Mark Korson.

 WE ARE LOOKING FOR…
 
Patients, caregivers and/or family members who are interested in telling their stories live or having their stories videotaped.  We are interested in stories that reflect the broader patient experience. The more variety in the stories, the richer the learning potential.

Please help us in our efforts to raise awareness about mitochondrial disease through this innovative educational outreach to the medical community. For more information about this project, please  email info@mitoaction.org
Stealth BioTherapeutics Enrolling MMPower-3 Trial
Stealth BioTherapeutics completed the REPOWER trial for primary mitochondrial myopathy. RePOWER was a prospective, non-interventional study. The study primarily assessed the relationship between a patient’s diagnosis and experience living with PMM, as well as local and regional differences in care and diagnosis.

The trial  currently enrolling  is MMPOWER-3 which is a phase 3, randomized, double-blind, parallel-group, placebo-controlled trial to evaluate the efficacy and safety of daily subcutaneous (under the skin) injections of elamipretide in patients with PMM followed by an open-label treatment extension. Initially, the trial was to enroll participants that participated in the REPOWER trial only. The trial protocol was just updated to  allow patients who did not participate in REPOWER to enroll in MMPOWER-3  if they have genetically confirmed and clinically diagnosed primary mitochondrial myopathy (PMM). Other criteria apply, see  clinicaltrials.gov  for additional information. Stealth BioTherapeutics is looking to recruit approximately 200 patients globally. The objectives of the study are to evaluate the effects of elamipretide therapy on functional assessments (6-Minute Walk Test), patient and clinician reported questionnaires, and safety in patients with PMM.

Click here for more details. 
Nobody Fights Alone...Reach out to us!
We're always here!
Mito411 - Connect with support from those who can relate to the journey of diagnosis 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

We will be live in the group on Monday, January 14th at 7:00pm EST! We hope you can join us!

Patient Support - NEW PROGRAMS 2019!!
Our new Mito Champions group will be open for you to join in 2019! Would you like to engage with the MitoAction community, help with awareness events in your area, and provide feedback to help us serve the mito community better? Then our Mito Champions program IS for you! Help keep the energy strong and be a driving force to help us support our patients and families.

For more information, email info@mitoaction.org.
There is no greater advocate than a parent of a child with a rare disease.
This new program will bring together Moms from across the country who have found their voice and are eager to share and help others along the way.

For more information, email info@mitoaction.org .
January 2019 Support Schedule
Patients Making a Difference


Mito Warrior, Sheridan Johnston, has partnered with Maine Hempworks to create a lip balm to benefit MitoAction. Purchase the Vanilla Chai lip balm and proceeds will be donated to MitoAction.

Sheridan says, "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."
Mito Town Hall Meeting

The MitoAction team looks forward to hosting the annual Mito Town Meeting on Friday, January 11th, 2019 from 12pm - 2pm EST. 

Representatives from mitochondrial disease organizations and institutions around the world will talk about what's ahead for the community in 2019.

This call is open to everyone and listeners can call in toll free at 866-414-2828; participant code: 017921#

Mito411 Volunteer Opportunity!
MitoAction Mobile App
Start off the New Year with the MitoAction Mobile App. Our App allows you to:

1. Create your digital binder of past records.
2. Add appointments to your HIPAA compliant in-app calendar.
3. Set reminders to take medication, complete care tasks and track symptoms.
4. Capture incidents and their impact in real-time.
5. View and share care history reports with family 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!
Mito Socials & Mito Playdates
Upcoming Mito Socials
Click below for details!
Our 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 to give and receive support. Whether at a local park, library or school, these informal gatherings allow the children and their families to develop meaningful relationships with others in their area, further 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!