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Day 12 of 30 Days of MD Topic: Awareness and Advocacy This is @neil_kramer’s story: My name is Neil Kramer. The late Christopher Reeve was once quoted, “I think a hero is an ordinary individual who finds the strength to persevere and endure in spite of overwhelming obstacles.” I was diagnosed with Limb-Girdle Muscular Dystrophy three years ago after having frequent falls, difficulty navigating stairs, getting up from chairs, and just overall progressive leg weakness. Like most of you, we go through stages of grief when diagnosed with a rare disease. I finally decided not to let MD define me. I decided to focus on building awareness of all forms of MD and to advocate for individuals with disabilities. I am now a candidate for City Council! I work for a non-profit that coordinates services for persons with developmental disabilities and their families. Part of my job is to meet with our elected representatives and their staff to ensure services for those we serve remain intact. I would like to challenge all of you to engage the leaders of your community to build awareness for MD diseases. Educate yourself: – Learn about your local community such as your City, County and State. Research MD advocacy websites to learn about the issues that impact MD. Engage to build awareness: – Write, call, or meet with your local elected leaders to discuss MD, how the disease impacts your life, and how your family is impacted. Personal stories mean a lot more than charts and graphs. Over time, relationships can be built. Advocate: – Real change comes from advocacy! Situations can change on a daily basis. On a local level, perhaps a wheelchair accessible ramp is needed to access a community pool. If an elected leader gets numerous calls from the disabled community, change can happen. On a larger level, State and Federal oversight and funding can impact research for possible cures for MD diseases, ensure accessible air travel, and currently COVID-19 resources for persons with disabilities. A simple phone call or letter to tell YOUR personal story can affect change! We can make a difference! #MDAwarenessMonth #MDAwareness #30daysofmd
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