Amy Cherrstrom via Crowdrise
October 19, 2014
BENEFITING: National MPS Society, Inc.
EVENT DATE: Oct 12, 2014
Jack, our 8 year old son, came up with the idea to hold a long drive contest to raise money for Hunter Syndrome research (MPS II) and compete against his brothers. Jack's brothers, Alex and Nick, have Hunter Syndrome, a rare genetic disorder that only effects boys and causes death by the second decade in the severe forms. Due to a gene mutation, they're missing an enzyme that purges waste cells from their bodies. Alex is more severely effected at this point than Nick, as Alex has limited speech, has had multiple surgeries, and will have more surgeries to repair the damage this disease is doing to his body. Nick can talk, run, plays sports, and enjoys playing with others. Alex was diagnosed first and that basically has helped preserve Nick's life, so Nick enjoys a better quality of life for now since he was able to receive treatment beginning at 3 months old. Nick may have the same regression and loss of skills, his ability to talk, and other severe effects but there's still time to save them! More innovation in therapies is needed and we're hopeful for a cure.
Here's how the Long Drive Competition works:
1.) You make a donation.
2.) You'll be assigned a ball for the long drive competition. Your ball will be given to Team Jack, Team Nick or Team Alex. One of the boys will hit your ball, a measurement will be taken and published on raisingrareboys.blogspot.com. Oh yeah, you bet we'll take video of this!!
3.)The donor's ball that is driven the farthest by each boy will receive a special prize package of golf goodies or a special prize basket put together by the boys for that donor. (Examples of prizes are golf apparel, a foursome of golf, a Long Drive II Survive T-shirt, and many more prizes!)
Our priorities are to fundraise for MPS II research, through the National MPS Society:
1.) Fund research to develop new treatments, such as medicine that can pass through the blood brain barrier and effect their brain function and nervous system. Without this, death occurs by the second decade of life.
2.) Fund gene therapy research
3.) Search for a cure
Thank you so much for supporting our sons!
The Cherrstrom Family