When our daughter Jill was positively diagnosed with 4H Leukodystrophy in 2013 we had no idea whatthat was or what it meant. We were told it was extremely rare – and at the time there were less than 200 cases positively identified worldwide. We knew we were in for a long hard battle – and without much support. There simply was not enough known about 4H Leukodystrophy because it was so uncommon. We knew we had to do something.
My wife Debbie and I started Fore For 4H in January 2015. I had some friends who liked to golf – and I figured if they told a few friends and they told a few friends – maybe we could raise a few thousand dollars – and we could donate it to the hospital hoping that would help with research. At least we were trying to do something. At the time we were not aware of any organizations that were providing any support for 4H Leukodystrophy specifically.
We organized our first golf outing for the summer of 2015 and the response and support were overwhelming. We raised $15,000 - far more than we ever had imagined. We donated that money to Dr. Adeline Vanderver and her team – who at the time were at Children's National Medical Center in Washington D.C.
Since then we have had a golf outing every summer. Each one has been greatly successful. Dr.Vanderver and her team have moved to Children's Hospital of Philadelphia - and our support followed. In 2018 we were contacted by Ron and June Garber - parents of another child with 4H Leukodystrophy. They were starting their own organization to combat this awful disease - The Yaya Foundation. After talking with Ron we decided it would be best for both of our organizations to combine our efforts. Ron put together a strong Board of Directors and asked Debbie and I to be a part of it. The money we raise is now donated to The Yaya Foundation for 4H Leukodystrophy – and is distributed among the network of physicians that are working on research – in the United States, Canada, and The Netherlands.