These are the organizations I support and information about the work I do with them, what they mean to me and why I am involved with each of them.
My father was diagnosed with muscular dystrophy in 2005 and I was diagnosed in 2006. Since our initial diagnoses, the Muscular Dystrophy Association (MDA) has been a great source knowledge and treatment to assist us moving forward. The MDA provides support to clients through health clinics, and they also host several events throughout the year to raise awareness and funds used to aid people suffering from the various types of muscular dystrophy.
When I was diagnosed with muscular dystrophy, I felt alone and didn’t know who I could talk to. Through the MDA, I was able to connect with other clients, clinicians and families dealing with similar health conditions, which was a huge help in simply being able to speak with others who can appreciate and relate to some of the same issues.
Since 2007, I have participated in the MDA Muscle Walk every year and have supported the development of Team Momentum since its establishment in 2014. I was also awarded the great pleasure of delivering speeches on various occasions about what the MDA means to me, and how they have helped along the way.
The specific type of muscular dystrophy I suffer from is known as myotonic dystrophy type 2 (DM2). Other than family, I had never met anyone with DM2 until I became involved with the Myotonic Dystrophy Foundation (MDF) in 2014.
This foundation has been a huge help to me since I first reached out to them a year ago. The MDF is based out of San Francisco, California, and I’ve attended their annual conference in Washington D.C. as well as a Stanford Myotonic Dystrophy Patient Meeting in Costa Mesa, California. Attending their gatherings has enabled me to connect with people who share similar health issues.
This past year has allowed me to connect with a few other people through the MDF who share my diagnosis of DM2. Upon my return from Mt. Everest, I hope to assist in the development of a support group in the Chicagoland area.
The St. Baldrick’s Foundation is a volunteer-driven charity committed to funding the most promising research to find cures for childhood cancers and give survivors long, healthy lives. St. Baldrick’s is 2nd in funding for childhood cancer research and grants only to the U.S. government.
I have been an active participant (shavee) with St. Baldrick’s ever since my father’s diagnosis and death from cancer in January of 2009. For years, I have been shaving not just my head, but also my beard, which I grow annually specifically for this event. In March of 2015, I received the honor of being “Knighted” due to my years of participation – what a treat!
Millions of Americans live with heart disease, stroke or a cardiovascular condition. The American Heart Association (AHA) helps save and improve lives through research, education and emergency care. I’ve participated in a number of walks and benefits on behalf of the AHA through the years. This association is important to me, as both myself and several members of my family, have suffered and died from cardiac irregularities.
National Wear Red Day is something I also participate in every year, which is promoted by the AHA and urges people to wear red for a day to raise awareness for heart disease and stroke.
The “Young Hearts with ICDs” and “Young ICD Connection” are two Facebook groups I belong to that were created by the hosts of the annual meetings for people living with ICDs (implantable cardioverter defibrillators) at the University of Iowa and University of Michigan respectively. These ICD meetings are organized by clinics at their hospitals, and have been extremely helpful in connecting with other ICD recipients in all age groups. I am blessed to have had the opportunity to stand in front of these groups and share my story and conditions, and I’m honored to say I’ve run the Young Men’s discussion group at the “Young Hearts with ICDs” conference for the last several years.
Also known as the official sponsor of birthdays, the American Cancer Society (ACS) urges people in the community to join the fight against cancer. It is another organization I wholeheartedly support. Unfortunately, most of us know someone who has suffered from cancer, and I have known many people with cancer in my lifetime. As with these other groups, I support this cause and volunteer when I am able to participate in various walks and gatherings to raise money for cancer through ACS.
Learn more about how I’ve overcome adversity and managed to live a life of adventure despite debilitating health.
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