ALAMEDA -- Leslie Krongold of Alameda has been living with Myotonic Dystrophy for 20 years.
Diagnosed in her 30s, the effects of the inherited disease have been gradual: She walks slower now and drops things more and she might struggle to button her shirt. Other than that, Krongold's quality of life is still good.
However, DM, as it's known, is a variable and complicated disorder -- its symptoms range from speech impairment to heart function abnormalities -- and it can impact a person's mobility and cognitive ability, making it hard to study and work. There is no cure or treatment specifically for DM.
In order to raise awareness about the disease, which affects at least 100,000 people in the United States, Krongold has organized the fundraiser "Dine & Donate." On March 21, Tomatina Restaurant on Park Street will donate 15 percent of food and liquor sales to the Myotonic Dystrophy Foundation, a nonprofit organization dedicated to supporting people with the disease and researching a cure.
To participate, print and bring the Dine & Donate flier to Tomatina, and give it to the server when you pay. The flier is at: http://alameda.patch.com/events/dine-donate-at-tomatinas-restaurant-for-myotonic-dystrophy-foundation#pdf-13513200
Krongold said it's important to build awareness about DM, in part because the
Soon after her diagnosis, Krongold met with a genetics counselor at Kaiser Permanente to learn more about the disease. By looking at old family photos, the counselor could identify DM in Krongold's family from changes in certain members' facial muscles, where dystrophy begins. Many of those relatives had died of sudden heart attacks in their 50s.
An inherited disease, Myotonic Dystrophy is passed from parents who have DM to their children, at a rate of 50 percent. This is another reason why it's important for people to learn more about the disease and understand the risks involved, Krongold said.
Established in 2007 by families living with the disorder, the Myotonic Dystrophy Foundation strives to create community and provide information. Fundraising efforts focus on research for treatments and cures for the disease. Based in Menlo Park, the MDF offers members an online community forum, and has listings for support groups throughout the state.