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State honors rare disease sufferers

To Covington County residents, Brady Fore is already a somewhat well-known name. After today, all of Alabama will know his name — and about others like him who suffer from uncommon diseases — after the governor has designated today, Feb. 28, as “Rare Disease Day” in Alabama. This will also be the first time the nation will recognize the last day of February as “Rare Disease Day.”

Brady, 5, has Angelman syndrome, a genetic disorder that causes developmental delays and neurological problems. The disorder causes him to be non-verbal and have seizures. It is considered a rare disease because it affects fewer than 200,000 Americans. Since so few people have the disease, few Americans are aware it even exists.

The spotlight was given to “Rare Disease Day” to increase public awareness of this and other uncommon diseases. The day is also recognized by the National Organization for Rare Disorders (NORD) to call attention to the public health issues associated with rare diseases, which affect nearly 30 million Americans and countless others around the world. This will be the second time for the worldwide recognition.

“People with rare diseases remain a medically underserved population in every country,” said Peter Saltonstall, president of NORD. “This day is intended to bring together the patients and families with rare diseases to discuss the need for greater awareness, more research, and better access to diagnosis and treatment.”

Stephanie Fore, Brady’s mother, said she is grateful that the state is commemorating “Rare Disease Day” and hopes it brings more attention to little-known diseases.

“I think it’s wonderful,” Fore said. “It sheds light on a lot of disorders and diseases that people never heard of. We try to spread the word about Angelman syndrome every chance we get.

“Brady is such a wonderful child,” she said. “There are so many more children out there that while they may not suffer from Angleman syndrome, they may have some other something that is not easily recognizable like a child with say, Down’s syndrome or multiple sclerosis.”

Fore receives services and assistance through Children’s Rehabilitation Service, a division of the Alabama Department of Rehabilitation Services (ADRS).

Other Alabamians with rare diseases also can receive assistance through ADRS, the state agency whose mission is to enable Alabama’s children and adults with disabilities to achieve their maximum potential. Through its four major programs, the department provides medical, educational and employment assistance to people of all ages with disabilities.

For more information about ADRS, call 1-800-441-7607.