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Author: Laurie2ks Add to my Favorite Fools Ignore this person (you won't see their posts anymore) Number: of 5550  
Subject: The Parent Project Date: 10/15/1999 5:50 PM
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Please support and select the Parent Project, a nonprofit organization that was founded by a small group of concerned parents, whose children have Duchenne or Becker muscular dystrophy. Its mission is to educate the world on Duchenne muscular dystrophy and secure funding to find a treatment or cure for this killer disease.

Duchenne is a silent murderer. Duchenne can strike anywhere. It is an equal opportunity disease that occurs in all populations with the same high frequency, regardless of race, ethnicity, national origin or socioeconomic class.

One in every 3,500 boys worldwide will be diagnosed with Duchenne or its sister disease, Becker muscular dystrophy. Although Duchenne is a genetic disorder, only 30-50 percent of cases are inherited from carrier parents; the remaining cases occur due to a high spontaneous mutation rate of the gene in sperm and egg cells. EVERYONE is a potential carrier of Duchenne.

A baby boy with Duchenne appears quite normal at birth. Slowly, progressively over the next 16 years, his muscles will stop moving. When he reaches his early teens, a time when he should be developing his own independence, every motor skill he has learned, as a child will be taken away from him. The boy will be sentenced to a wheelchair. He will never walk again. Someone will have to assist him in the everyday tasks we take for granted, bathing, eating, everything. Most boys with Duchenne die before reaching their 20th birthday. His mind will be sharp throughout.

Eventually, the last muscle will go- that is the heart, and it will stop beating forever. And the child will be gone…but the disease will live on.

As parents, grandparents, scientists, friends and caring human beings, we must be concerned with muscle tissue in disease and in health. Muscle is the largest organ system of the body, comprising approximately 30% of body mass. It is capable of regeneration, hypertrophy, and alteration of metabolic status over very short periods of time. Apparently most of us take our muscles for granted, never imagining life without walking, turning over in bed, lifting a fork, or simply MOVING.

The Parent Project is working with the NIH to do what has been needed for a long time: Development of a MUSCLE, MOBILITY, and MOTILITY Institutional Review Group (IRG). This will help EVERYONE, not just DMD children. This IRG would consider research applications focused on the muscular system responsible for human mobility.

Muscle tissue is critical to movement. Muscle is critical to maintain our body temperature. Muscle is critical for breathing. Muscle is critical for digestion. Muscle is critical if our heart is to continue to beat. Muscle is critical to human life, so let's not be penny wise and muscle foolish.

With an IRG dedicated to muscle, mobility and motility, the NIH can better consider research applications focused on basic studies of muscle development and physiology; muscle molecular biology from proteins to multiple systems; physical activity, energetics and biomechanics; pathophysiology of muscle; and clinical studies pertaining to muscle diseases, their prevention and treatment. In watching these DMD boys lose muscle and function, the Parent Project recognizes the need to support the investigation of muscle for everything.

This year, the Parent Project had the opportunity to present to the Congressional Subcommittee on Labor, Health and Human Services. They requested equity in research spending for children with Duchenne, and a focus on muscle research for all people, everywhere. Those in Congress who are supporting the Parent Project's efforts: the Honorables Tom Bliley, Ed Bryant, Roger Wicker, John Porter, Nita Lowey, Jim Moran, Bill Young, Fred Upton and Jerry Costello.

The NIH study group will help scientists to understand the mechanisms of muscle function in the aging process, in space travel, in recovery from sports related injuries and in disorders such as Duchenne muscular dystrophy.

Boys with Duchenne and Becker wish to live and move. Everyone, everywhere on earth, whether old, injured or ill wishes to preserve and protect muscle function.

While the Parent Project goal is to keep DMD boys from losing their mobility and their lives, they clearly recognize the importance of educating the public about muscle as a critical tissue and believe that more research on muscle tissue will provide benefit for all humankind.

I hope that you will choose the Parent Project to support, as they desperately need corporations and entities like The Motely Fool to step and and say, "We'd like to help." Even if you don't select the Parent Project, if you agree with the Parent Project on establishing an IRG group at the NIH to study muscle function, please send your letters to Dr. Ellie Ehrenfeld, Center for Scientific Review, National Institutes of Health, MSC 7776, Room 3109, 6701 Rockledge Drive, Bethesda, MD 20892-7776 or fax her at 301-480-3965 or e-mail her at ehrenfee@drg.nih.gov.

For more information on the Parent Project, please visit their Web site at www.parentdmd.org or e-mail me at bigideas@walker-assoc.com

Thanks!

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