My dad, Jack Kane, was diagnosed with Adrenoleukodystrophy (ALD) when I was three years old. He died from ALD when I was five. Here is a pciture of my dad and me before he got sick.
ALD is a rare neurological disease for which there is no effective treatment or cure. One out of every 18,000 people is diagnosed with the disease. The disease is hereditary. Males get the symptoms of the disease, and females are carriers. Some carriers get symptoms, but their symptoms are usually less severe. ALD usually affects boys when they are between 4 and 10 years old. Sometimes, though, males don't get symptoms until they are older - my dad didn't begin to have symptoms until he was around 45. Once the symptoms begin, there is no cure. Boys and men usually lose their ability to hear, swallow, walk, talk and think, and then they go into a coma and pass away within a few years.
When my dad first got sick, he created a charity run called the "Run for ALD." It is a 5k run and a 1-mile walk held every year at the Cooper River Park in Pennsauken, New Jersey. You can run or walk and win prizes. Hundreds of people attend every year. The event raises money for ALD research. Run for ALD is a 501(c)(3), and all proceeds of the run are donated to the Kennedy Krieger Institute in Baltimore, MD, a non-profit hospital whose doctors and scientists are leaders in the efforts to treat and cure ALD.
Next year will be the Ninth Annual Run for ALD. I am really involved in the Run for ALD and trying to raise money for ALD research. Over the past nine years, Run for ALD has donated more than $130,000 to the Kennedy Krieger Institute to help find a cure for this disease. To learn more about the Run for ALD, go to www.run4ald.org.
Matthew's "Dream Team" at the Run for ALD in 2010.