Bethanys Hope Foundation – Supporting Charity Sponsor

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We are pleased to be teaming up with Bethanys Hope Foundation as the official Charity Sponsor of the Rock the Road 5K. Bethanys Hope Foundation mission is to raise awareness and provide funding for Metachromatic Leukodystrophy research to find a cure.

About Bethanys Hope Foundation

Since 1995 the Volunteers, Directors and members of Bethanys Hope Foundation have reached out into the communities of South Western Ontario to establish a tremendous network of friends and corporate partners to continue the fight for research funding. Over the last seventeen years they have combined their talent and energy to execute two additional major lotteries, fourteen Charity Gala Balls, a multitude of charity golf tournaments and eight “Rock the Park” Music Festivals. They are well on the way to reach another milestone… $4 million research dollars for this non-stop search for the ultimate goal… the cure !

LEARN MORE ABOUT BETHANYS HOPE FOUNDATION

 

 

 

What is Metachromatic Leukodystrophy?

Imagine the Possibilities – Bethanys Hope Foundation from Bethanys Hope Foundation on Vimeo.

Metachromatic Leukodystrophy (MLD), the most common form of Leukodystrophy, is a rare inherited neurometabolic disorder affecting the white matter of the brain (Leukoencephalopathy). It is characterized by the accumulation of a fatty substance known as sulfatide (a sphingolipid) in the brain and other areas of the body (i.e., liver, gall bladder, kidneys, and/or spleen). The fatty protective covering on the nerve fibers (myelin) is lost from areas of the central nervous system (CNS) due to the buildup of sulfatide.

Symptoms of Metachromatic Leukodystrophy may include convulsions, seizures, personality changes, spasticity, progressive dementia, motor disturbances progressing to paralysis, and/or visual impairment leading to blindness.

Metachromatic Leukodystrophy is inherited as an autosomal recessive trait. There are three types of the disease that have similar symptoms. However, they are distinguished by the age of onset: infantile, juvenile, and adult forms of Metachromatic Leukodystrophy.

MLD is a rare disease, affecting about one in 60,000 people.

Three Types of MLD:
Late Infantile – Onset of symptoms between 6 mo. and 2 yrs.
Juvenile – Onset of symptoms after age four until sixteen.
Adult – Onset of symptoms late teens.