Fund Care and a Cure for Myotonic Dystrophy!

Support Jim and Andrew in their Swim Around Lido Key Race

Fund Care and a Cure for Myotonic Dystrophy! image

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Support Jim and Andrew in their Swim Around Lido Key Race

Swimming for a Cure!

UPDATE

MARCH 12, 2021: As many of you probably expected, the Race Around Lido Key was cancelled last year and will not be scheduled again this year. Due to the cancellation and in lieu of the race, I have committed to a different swim in support of the Myotonic Dystrophy Foundation (MDF). While the exact date remains undetermined, I will be attempting to swim across the St. Johns River, just south of Jacksonville, Florida (near where I-295 crosses the river). This is just over 3 miles - a similar distance to what I would have completed in the original race.

I would like to thank everyone who has supported MDF through donations associated with my fundraiser thus far and humbly ask that you consider another donation or a new one as part of these efforts.

Stay safe and healthy,
Jim Dvorak

Jim Dvorak loves the outdoors, has a good job and a beautiful wife and daughter, Heather and Marie. Three years ago they were both diagnosed with a rare genetic disease called Myotonic Dystrophy.

While the symptoms of both Jim's wife and daughter remain manageable at this time, they will have to be monitored for the rest of their lives and, depending on the progression of the disease, could eventually become fully disabled or worse, an early death.

Swim without Limits

So why is Jim sharing all this? In April, Jim committed to competing in a race that is outside of his normal routine. He has competed in many long relay and team races in the past but they have always involved running and biking. In this race Jim will team up with his friend and neighbor, Andrew Hopkins, to compete in the Swim Around Lido Key race sponsored by Swim Without Limits. This will be a 7 mile open water relay swim where Jim and Andrew have to provide their own support via kayak. They will each have to swim a total of 3.5 miles as well as paddle 3.5 miles. Jim decided to dedicate this race, and the associated training for it, to his wife and daughter. Visit Swim without Limits for more information on the race.

As part of that dedication Jim set a goal to raise $10,000 for the Myotonic Dystrophy Foundation, commonly referred to as Myotonic. Myotonic is a non-profit organization founded in 2007 by families living with myotonic dystrophy (DM). Through community support, education, advocacy, and research Myotonic is committed to enhancing the quality of life of people living with myotonic dystrophy, and maximizing efforts focused on treatments and a cure for DM.

You can help not just Heather and Marie but all of those who are affected by this disease by making a donation, no matter how small, to Myotonic.


About Myotonic Dystrophy

Myotonic dystrophy (DM) is a multi-systemic inherited disease that affects at least 1 in 2,300 people (more than 150,000 in the US alone). DM is an under-diagnosed genetic disease, clinically described as a degenerative (symptoms become increasingly more severe later in life) with anticipation (disease symptoms tend to be more severe and occur earlier in successive generations). Myotonic dystrophy is a highly variable, multi-systemic genetic disorder for which no therapies or a cure currently exist. DM symptoms can range from serious cardiac and respiratory issues to significant and ongoing GI impairments, and permanent cognitive and emotional delays or deficits. More information is available at www.myotonic.org.

About the Myotonic Dystrophy Foundation

Who We Are
The Myotonic Dystrophy Foundation, commonly referred to as Myotonic, is the world's largest patient organization focused solely on myotonic dystrophy. Our mission is to enhance the quality of life of people living with myotonic dystrophy (DM) and accelerate research focused on treatments and a cure. Myotonic allocates its funding with 87 cents of every dollar donated going to fund research or provide resources to families living with DM.

What We Do

Support and Education
Myotonic provides emotional support, education and resources to affected individuals and their families, and conducts outreach to raise awareness about DM in the medical community and the general population.

Research
Myotonic is committed to accelerating research and therapies. Efforts include: supporting up-and-coming postdoctoral fellowships to expand the research base; funding the development of new animal models, cell lines and a drug testing facility; launching and managing the Myotonic Dystrophy Family Registry; investing in target identification, drug screening, clinical trial design and outcome measures; and more.

Advocate
Myotonic advocates for legislation, research, and infrastructure initiatives that advance our understanding of myotonic dystrophy, accelerate drug development, and improve diagnosis and care. We strive to raise visibility of myotonic dystrophy and people living with DM with key stakeholders in Congress, federal and state agencies, medical professionals, and the media.

Learn More
Find more information about Myotonic's Impact and how your donations are spent.