Two Organizations, One Event: Fighting Leukodystrophies, Eating Disorders
AMARILLO, TEXAS – The Stennis Foundation and TeamBraeden of Amarillo, Texas, are coming together to fight Leukodystrophies and Eating Disorders. They are sponsoring the L.E.D. (Leukodystrophies and Eating Disorders) Walk on Saturday, September 22, 2007, at Sam Houston Park, located at Line Avenue and Western Street. Sign-in and late registration begins at 9:00 a.m.; the walk begins at 10:00. Proceeds from this event will be used to fund Leukodystrophies research, as well as inpatient treatment for Eating Disorders.
The Leukodystrophies are a group of rare brain-degenerative diseases that strip away myelin, the insulated covering of nerves in the brain. Prognosis for these diseases depends on the specific type of Leukodystrophy. Treatment is symptomatic and supportive, and can include medications, various therapies, and possible bone marrow transplantation. Government funding for research is limited, so it is important to provide funding for research to find a cure for these diseases.
Eating Disorders – the main types being Anorexia Nervosa and Bulimia Nervosa – are real, treatable medical illnesses in which maladaptive patterns of eating take on a life of their own. They frequently develop during adolescence or early adulthood, but have been known to develop during childhood. Patients with eating disorders can experience physical health complications, including heart conditions and kidney failure, which can lead to death; therefore, to recognize eating disorders as serious, real medical conditions, and insuring that patients can get the help they need, is of the utmost importance.
Two organizations. Two causes. One event.
For additional information regarding the Leukodystrophies, log on to www.stennisfoundation.org. For additional information regarding Eating Disorders, or to download a brochure for the L.E.D. Walk, log on to www.teambraeden.org, or call (806) 467-2747.
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The Stennis Foundation
PO Box 30065
Amarillo, TX 79120
Founder and President
About The Stennis Foundation: The Stennis Foundation is a nonprofit committed to raising awareness of the Leukodystrophies, and to raising funds for Leukodystrophies research. The Stennis Foundation became a 501(c)(3) nonprofit organization in October of 2002, after Dr. Sam Stennis, a former Amarillo optometrist, was diagnosed with adult-onset Metachromatic Leukodystrophy (MLD) at age 47. When a friend of the Stennis family realized that there was no treatment or cure for MLD, she set out to find one, and the work of the Foundation began. The Stennis Foundation currently supports research at Duke University in Raleigh-Durham, NC; Kennedy Krieger Institute in Baltimore, MD; and San Raffaele Institute in Milan, Italy. In these research projects, The Stennis Foundation has partnered with other organizations such as the Tomaino Children’s Fund, the Trimper Children’s Foundation, The Evanosky Foundation, and The Myelin Project, which has relocated its offices from the Washington, DC, area to Amarillo, Texas. The Stennis Foundation is leading the way in administrating funds through The Myelin Project, and forming an alliance with them. It is the hope of The Stennis Foundation that other organizations will allow The Myelin Project to serve as a clearinghouse for them, in administrating the funds that are needed and raised for Leukodystrophies research.
About TeamBraeden: TeamBraeden is an Eating Disorders Assistance Program. The funds raised by TeamBraeden go toward helping educate the public regarding eating disorders: what they really are -- and what they are not. TeamBraeden assists with financial help, by way of application process, to cover costs associated with treatment, that insurance does not cover, such as counseling, and inpatient therapy.
“Eating disorders are not due to a failure of will or behavior; rather, they are real, treatable medical illnesses in which certain maladaptive patterns of eating take on a life of their own. The main types of eating disorders are anorexia nervosa and bulimia nervosa. A third type, binge-eating disorder, has been suggested but has not yet been approved as a formal psychiatric diagnosis. Eating disorders frequently co-occur with other psychiatric disorders such as depression, substance abuse, and anxiety disorders. In addition, people who suffer from eating disorders can experience a wide range of physical health complications, including serious heart conditions and kidney failure, which may lead to death. Recognition of eating disorders as real and treatable diseases, therefore, is critically important” (NIH, 2007).
When insurance refused to cover areas of her daughter's treatment, a mother approached her daughter's nurse practitioner and therapist about starting an organization that would help, and TeamBraeden was born. TeamBraeden was officially incorporated on December 27, 2006; and is recognized by the Internal Revenue Service as a 501(c)(3) nonprofit organization.
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