This coming week, September 18 – 24, marks World Mitochondrial Disease Week. It provides a time for the entire mito community to share our joys, our sorrows, our hopes, and our fears. It’s a week when we can reflect on all we’ve collectively accomplished, while recognizing there is still an incredible amount of work to be done.
In previous years, we’ve focused largely on awareness – and certainly you’ll see social media posts that try to help the world better understand the disease. But you’ll also see a lot from us about steps you can take at any point to help yourself or loved ones – whoever connects you to this disease – move the mito community forward.
Maybe you already attend support meetings – or even act as a UMDF ambassador, helping other families cope with diagnosis. Maybe you are already a part of mitoSHARE, our new patient registry. Or, maybe you received complimentary genetic testing thanks to our pilot program.
If one of our services has helped in some way, we encourage you to share with others in the mito community. We need patients and families affected by mitochondrial disease to know that this is not a journey you have to travel alone.
That’s the reason the United Mitochondrial Disease Foundation exists. And that’s why we have World Mitochondrial Disease Week, to let those with this disease know that they are not alone. We are united toward a cure – today and every day.
We are stronger when we use our collective knowledge, hands, and words to energize the fight. Together, we will chart a course toward treatments and the eventual cure of mitochondrial disease.
Sincerely,
Brian Harman
UMDF President & CEO
We’ll have a lot of great content on social media this coming week. I encourage you to follow, share, and comment using the icons at the bottom of this email. Until then, here are a few quick links that you may find helpful.
- Participate in a clinical trial using UMDF’s Clinical Trial Finder Tool here.
- Help move research forward by joining mitoSHARE, UMDF’s patient registry here.
- Attend support meetings and connect with other mito families here.
- Locate a Mito Doc or connect with a mito specialist here.
- Learn how to get involved and support the mito community here.
Social Media Dates & Tags:
Sept 18-24 – World Mitochondrial Disease Week
Use these tags and share your story on social media: #worldmitodiseaseweek #WMDW.
Click here to learn more about the global effort.
Monday, Sept 19 – LHON Awareness Day
Learn more about LHON here.
Saturday, Sept 24 – Light Up for Mito
Post your photos of your local monuments, lit green and tag #LightUpforMito.
Click here for more info.
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This week, as part of World Mitochondrial Disease Week, UMDF President & CEO Brian Harman caught up with the offices of several members of Congress to talk about mitochondrial disease and the support we need from the federal government. We wrapped up each call with one quick fact – how many supporters lived in their local district, ranging from a few hundred into the thousands. Given that mitochondrial disease is a “rare” disease that affects an estimated 1 in 5,000 people, we heard a lot of surprise.
But it’s not just patients. It’s families, it’s friends, it’s neighbors. When we speak we our collective voice, we are that much greater. So today, as we wrap up World Mitochondrial Disease Week today, it seemed like a good time make one last ask.
In that vein, for this month’s advocacy alert, UMDF would like to take a look back at all we’ve accomplished over the last year and use this as an opportunity for our members to reach out to their Congressional representatives and reignite some of our most important ongoing efforts to advance mitochondrial disease awareness, research, and treatment.
Click on the below links to visit the UMDF Advocacy Center page for each.
1) Urge Your Senators to Extend Telehealth Flexibilities
Telehealth irrevocably transformed into an indispensable part of our healthcare system. It has been critical for mitochondrial patients to receive care in their homes and access specialists regardless of where they live. However, many of the flexibilities afforded under the COVID-19 Public Health Emergency are only temporary. In July, thanks in part to UMDF efforts, the House passed the Advancing Telehealth Beyond COVID-19 Act (H.R. 4040) by a vote of 416-12. This bill would guarantee many of these critical telehealth flexibilities through 2024. We encourage you to reach out to your Senators and ask them to pass this important piece of legislation as it continues to work on permanent telehealth reform.
2) Co-sponsor Medical Nutrition Equity Act, HR 3783 and S. 2013
Thanks to your efforts, the Medical Nutrition Equity Act (MNEA) is up to 96 cosponsors in the House and 22 cosponsors in the Senate. The Act would require expand coverage of medically necessary foods (including vitamins) for digestive and inherited metabolic disorders. Although these foods are essential for patients, they are often expensive and not uniformly reimbursed by all health insurance carriers, leaving many families to foot the bill, which can be substantial.
3) Urge Your Members of Congress to Join the Bipartisan Mitochondrial Disease Caucus
The Mitochondrial Disease Caucus, co-chaired by Representatives Jim McGovern (D-MA) and Brian Fitzpatrick (R-PA), currently has 33 bipartisan members of Congress and provides an important forum for members and their staff to learn about and advocate for mitochondrial disease and related issues. Having a robust Caucus speaks to the prioritization of securing federal support for cutting edge research into mitochondrial disease to gain new insights and develop therapies and cures.
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