It’s a dark night, the cold crisp breeze brought goose bumps. The stars shined brightly. It was so quiet. You couldn’t hear a pin drop. The silence settled in peacefully. Then the phone rings, and shattles the dreams for tomorrow. The silence in the heart is crackling, hearing the heart breaking. The news of a newly diagnosis of a small innocent child still silenced the room. The mind races with thoughts…it couldn’t be true. How is it possible? Why? This doesn’t happen to us. It can’t. ….but it has.
Today, every 3000 males who are born will be diagnosed with Duchennes Muscular dystrophy. This year alone, thousands of families are learning about a disease for the first time. And the disease will be new to the family, with no family history. It will become frightening, confusing and heartbreaking. They will know nothing about the disease. They will be eager to learn about the disorder, and they will be eager to teach others about it.
Amongst nine (9) muscular dystrophies and the thirty-four (34) neuromuscular disorders, the disorders will continue to be silenced by the media, along with insurance companies and congress.
The general public, including those in the medical profession lack the total knowledge and understanding about the disorder to provide proper treatment and care for prolong life.
However, we who are affected with this disorder, and our community have the power to change this now. We can personally reach out to our community (family, friends, schools, medical professions, educators, etc…) by giving Muscular Dystrophy a voice. Like so many disease out there, we have the same power to use the Media and congress. We can write, e-mail, visit Newspapers reporters, television & radio stations, even create newsletters and flyers. You can also hold fund-raising events. Whatever the case maybe, YOU have the power to give Muscular dystrophy a voice-today!
This year, our family is holding a “5000-$5” Sparrow Campaign Fundraising to honor the Awareness for Muscular dystrophy month. This fundraising will help raise funds for two boys with muscular dystrophy who are in need for medical equipment that is not covered by the MDA, medical insurances including Medicaid. We have printed a nice 8 page family newsletter to educate our family about MD, including spreading the word about the fundraising. We also have a special program that will air in August with the local radio stations, the two local newspapers and local cable radio station. All it took was to fax to them about the event and share about Muscular dystrophy. .
We believe in the power of the media that can give Muscular dystrophy a voice. The more people know about MD/NMD. (as they know about Cancer, Diabetes, Parkinson’s, MS, Alzheimer’s, etc…), the more there will be a positive outcome for proper treatment and care…and the greatest opportunity to raise more funds towards more research and a cure.
You have the power to spread the news!! Share the power to voice muscular dystrophy by sharing with your fingers. To learn more about Muscular dystrophy, and our “5000-5” Sparrow Fundraising, visit our home web-site: www.HopeforMD.org. this August during our Awareness for Muscular dystrophy month.