Help Us Bring Myocarditis and Sudden Death into the Public Light

Activists Having A MeetingMyocarditis and Sudden Death Political Activism

Myocarditis is one of the leading causes of sudden death in children and young adults. However, it’s also a disease that too few are familiar with. At the Myocarditis Foundation, we encourage you to help us raise awareness about this rare form of heart disease. By contacting your local politicians in your city or state, you can influence heart disease policy and bring myocarditis awareness into the public eye.  Plus, healthcare providers and researchers can potentially benefit from better access to educational and financial resources as they work to find a cure.

How You Can Get Involved

In the mission to improve the treatment outcomes of people with myocarditis, one of the largest hurdles to surmount is the public’s lack of knowledge. Without awareness, researchers wouldn’t recognize the need for myocarditis-focused work, and caregivers wouldn’t be equipped to accurately diagnose it.

To help these professionals and provide support for patients and their families, you can become an activist in one or more of the following ways:

Advocate for a Local Myocarditis Awareness Day

Many major health conditions have regional and even national awareness days that help bring attention to them. This attention has a large role to play in the accurate and timely diagnosis of these diseases, the research surrounding them, and more.

If you want to help educate the public, caregivers, and researchers while showing community-wide appreciation for those with myocarditis, contact your local or state government and propose that they host a Myocarditis Awareness Day.

Fundraise for the Myocarditis Foundation

At the Myocarditis Foundation, we back several efforts that aim to improve the lives of people with myocarditis. These include performing research, inspiring and funding other researchers, educating care providers, and more. To help us continue to spearhead these endeavors, consider fundraising for or donating to the Myocarditis Foundation.

Invite Local Lawmakers to an Event

Whether you are hosting a fundraiser or are planning to attend one, invite one or more local politicians to attend. Once they have an in-person experience with someone who has been affected by myocarditis, they’ll gain a better understanding of the disease’s impacts and may be inspired to advocate for heart disease policy reform in their respective governments.

Ask Politicians to Reach Out to Caregivers

Receiving a personal letter directly from a politician is enough to gain anyone’s attention. Consequently, you can reach out to your local lawmakers and educate them about myocarditis, including its frequent misdiagnosis and underdiagnosis. Then, you can ask them to write to local medical professionals so they can relay the need for awareness and education.

Advocate for Myocarditis Patients

One of the most important ways that you can join the fight against myocarditis is to advocate for those – past, present, and future – that have been affected by it. A way to do this is by encouraging care providers and lawmakers to pursue the oftentimes unexplained, sudden deaths of healthy children. Ask local authorities that autopsy reports are not left undetermined, as this crucial data can directly influence heart disease policy across the United States.

A Look at Our Collaborative Efforts

Aside from hosting our free, educational website for patients, care providers, and researchers, the Myocarditis Foundation has also attended the National Organization for Rare Disorders (NORD) summit. There, groups like us joined together from around the country to discuss effective ways to advocate for patients with rare diseases like myocarditis. To learn more about our experience, you can check out parts one and two of our previous blog series.

Contact Us to Get Started

With so many ways to advocate for patients with myocarditis, there’s never been a better time to get started than right now. To join the fight for a cure, contact a member of the Myocarditis Foundation team today by calling 281-713-2962.

How Others Are Getting Involved

21 Oct
Awareness & Fundraising - Political Activism

Day 2 and 3 of NORD Summit

The second day of the Summit and the 3rd day, which was geared for members of NORD, continued to share the awareness being raised on what is happening in the...
21 Oct
Awareness & Fundraising - Political Activism

First day of the NORD Summit

I was very happy to be able to attend the 2016 Rare Diseases and Orphan Products Breakthrough Summit, which kicked off today with record breaking attendance,...

If you have any questions about getting involved, please contact the Myocarditis Foundation directly at (281) 713-2962.