Rare Disease Day is February 29th!
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Rare Disease Day
takes place on the last day of February each year. The main objective of
Rare Disease Day
is to raise awareness amongst the general public and decision-makers about rare diseases and their impact on patients' lives.
Join MitoAction to raise your voice and spread awareness about
mitochondrial disease. There are easy ways for you to get invovled:
- Wear green for mito on Rare Disease Day
- Share your story about living with mito with others who are not familiar with the disease
- Write a letter to your local representative informing them of what they can do to improve the lives of rare patients
- Paint your hands and share your photo
- Organize your own awareness event
Be sure to share how you’re spreading awareness on Rare Disease Day by posting on social media and tagging @mitoaction, #rarediseaseday, #shareyourrare, and #mitowarrior
Click
here
to find an awareness event near you!
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Thomas Schmid (age 13) has been battling Mitochondrial disease since 2012, and he continues to defy the odds of this debilitating disease.
Thomas is competitive by nature however, he cannot compete in physical sports like his three younger siblings. Thomas has found gaming as a way to compete with others, and this year he and MitoAction want your help to say “
game over
” to mitochondrial disease!
Come compete with Thomas in a Smash Brothers Tournament at Up Time Esports in Hanover, MA on March 1st and enjoy a day of fun, prizes and food as we raise awareness and help find a cure for mito.
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Meet April! April recently shared her story with us for Mito Warrior Wednesday. April was diagnosed with mito at 28 years old after 5 years of endless testing and doctor visits. She is the proud fur-mom to
Ariel, Stubbin, and Bailey!
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To view the videos of our past Mito Warriors, click
here
. If you are interested in sharing your story, email
jamie@mitoaction.org
.
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Did you know that
Mito411
has provided support for over 100 inquiries already this year?! We have patients and families from all over North America who are finding one-on-one support from our trained volunteers. Do you have questions about your or a loved one's symptoms and living day-to-day with this rare disease? The
Mito411
support line will be there to support you as you navigate this difficult road. Call
1-888-Mito411
to speak with one of our trained volunteers who will help guide you, listen and support you. We will try to connect you to valuable resources, so you know you are never alone.
Would you like to join MitoAction and support families who need it most? Become a Mito411 volunteer and make an immediate impact for families and individuals who need it most. For more information on volunteering, email
stephanie@mitoaction.org.
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Take Charge With MitoAction Mobile
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Take charge of your journey with mito by using the MitoAction Mobile platform. Track symptoms, medications, appointments, ER visits, manage your medical records using the digital binder feature, giving you access anywhere, anytime to critical medical information. To help you make the most of each doctor's visit, run a custom report to share what's happened since you last saw your physician.
Take control of your care, while also helping clinicians and researchers learn more about mitochondrial disease. The MitoAction Mobile platform is HIPAA compliant and free to all members of the MitoAction community.
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Momvocates was created by mito moms for mito moms! Join us as we use our strength in understanding the complexity of raising and caring for a child with mito as we support one another and raise our voices to support the mito community. We are connected through our journeys with mito and we are committed to forging that bond to allow us to empower, provide a space to shine and support one another in the moments when we need it most. Momvocates will ensure you are never alone, in a way that only others facing the same challenges can because we LIVE IT!
Join Momvocates and let us help you incorporate “Me Time” in your day, and become a more engaged Mom, wife, caregiver and friend. We will share our journeys and uplift each other every step of the way.
Are you a Momvocate? Then, we welcome you!!!
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MitoSocials help 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.
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March 28, 2020
Leawood Pioneer Library
Leawood, KS
2pm-4pm
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March 28, 2020
Catholic University of America
Washington, DC
2pm-4pm
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If you would like to host a MitoSocial in your local community,
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Since 2015, the Matthew Harty Camper Fund has awarded 36 college scholarships to
high school seniors or currently enrolled college students with a diagnosis of mitochondrial disease. Applications for the 2020-2021 are open now until
May 31, 2020
!
Qualification Criteria
- Must be a high school senior or currently enrolled college student.
- Transcript and enrollment verification required.
- Must include a letter of support from a physician or other healthcare provider who can verify the mitochondrial disease diagnosis and address the merit of the applicant.
- One-page essay required.
- Photo required with submission.
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MitoAction to Co-Host
2020 International Metabolic Conference
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On July 24 - 25, 2o20, MitoAction will partner with the
Organic Acidemia Association
to co-host the 2020 International Metabolic Conference at the Wyndham University Center Hotel in Pittsburgh, PA.
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The focus of this conference is to educate families with Organic Acidemia and Fatty Acid Oxidation Disorders on the medical management, nutrition and social needs of caring for themselves or a loved one with this chronic rare metabolic disorder. It is a great opportunity for families to share stories and support one another, along with having one-on-one time with professionals in the field.
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Be the change you want to see in the world!
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Kindness is always a choice. The more conditioned we are to respond with kindness, the more natural it becomes. It is on purpose with purpose. Join MitoAction in our kindness movement, and together we can raise our kindness levels.
Nice4Bryce
has dedicated the entire month of February as a month of kindness, in honor of Bryce Derosier, a Mito warrior that lost his battle in 2018. Help us reach 280+1 acts for his birthday on February 28th!
We are dedicating ourselves to inspire everyone to bring kindness to the forefront. Let's be more deliberate in our efforts, not because we have to, but because we want to. Not because others have been kind to us, but because being nice is the way of the heart.
Share your RARE and join us below! Kindness sparks change...
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"The Power of Rare Disease Advocacy"
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On February 7, Shannon von Felden from the
Everylife Foundation
spoke with us about "The Power of Rare Disease Advocacy." If you missed her original presentation - you can listen on our website!
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Ride in Style with Graceful Gears
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On April 24, 2020, MitoAction will partner with
Graceful Gears
to offer mito patients and their families the chance to ride in a luxury car of their choice in Boston! Have you dreamed of the opp
ortunity to take a ride in an exotic car? Well now you can!
Graceful Gears' motto is "Up-shifting Your Spirits". Their mission is to bring joy and happiness to individuals with a serious medical condition or special needs by riding in a car of their choice: Exotic, Super, Sports, Luxury or Classic Cars. MitoAction is excited to partner with Graceful Gears to bring this opportunity to the mito community!
Spots are limited so don't wait to register!
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Get your tickets for the hottest
Derby Day event in Boston!
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The 11th annual
Sandra K Russell Derby Day Benefit for Mito
will
return to Boston's Royale on May 2, 2020. Grab your hats and bowties - this is a celebration you won't want to miss!
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Matthew Harty Mito Classic
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On April 16, 2020, in conjunction with MitoAction, families from the North Andover community will come together to support the 7th Annual
Matthew Harty Mito Classic at the North Andover Youth Center.
All proceeds from this event help to ensure that any kid with mitochondrial disease that wants to attend summer camp has the opportunity!
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Safety of drug use in patients with a primary mitochondrial disease: An international Delphi-based consensus
Clinical guidance is often sought when prescribing drugs for patients with primary mitochondrial disease. Theoretical considerations concerning drug safety in patients with mitochondrial disease may lead to unnecessary withholding of a drug in a situation of clinical need. The aim of this new study was to develop consensus on safe medication use in patients with a primary mitochondrial disease.
To view the list and read the full article, click
here
.
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