The following is a note from the Triptow family:
Our objective is to raise money for research to help families that are affected by 4H Syndrome – an extremely rare form of Leukodystrophy. It is important that we raise money and awareness because this disease is extremely rare. There are just over 300 cases diagnosed worldwide. It is very difficult to receive federal grants and receive backing from large corporations when there are not enough patients. We need to do this on our own – until we receive the recognition necessary to make a difference.
THANK YOU ALL for making the 2021 Fore For 4H Golf outing a great success! Thanks to YOU we were able to raise $25,000 throughout 2021, including miscellaneous donations, the Wahoodlum Duckette Draft, and the failed Clambake! The combined effort made 2021 a GREAT comeback year!
SAVE THE DATE! The Fore For 4H Golf Outing 2022 for Saturday, July 30th. I am hopeful we can fill the course once again with 144 golfers. Last year Debbie and Jill were unable to be a part of the golf outing because Jill was in the hospital. Hopefully both of them will be able to make appearances this year!
Register for the event and follow us on Facebook and on Twitter for event updates: @h_for4 and @yaya4HL.
We look forward to seeing you again!
We are driven by the dream that one day, every child with 4H Leukodystrophy will have the chance to live a long, healthy life.
So we fight for these children by acting as a catalyst and a connector—bringing researchers together to accelerate the pace of discovery, while connecting families with vital education resources and emotional support.
We won’t stop until we find a treatment and, ultimately, a cure.
Your generous donation funds critical research into life-changing treatments and a cure for 4H Leukodystrophy, as well as vital programs that connect, support and empower families affected by this rare disease. All it takes is a simple click.