A few people asked for the written information we used for fundraising. Here are some examples of what I used at the fall festival when I was selling jewelry. I printed this and put it on the tables with the jewelry so people could read it. Of course I had a huge sign, too. I also have a simple power point I did for the chamber of commerce and Rotary Club last summer when I did a silent auction. e-mail me directly if you want that and I will try to send it to you.
WHAT IS GALACTOSEMIA?
Galactosemia is a rare Genetic disorder affecting about 1/60,000 people. Galactosemia can cause liver/kidney damage, cataracts/blindness, mental retardation, severe learning disabilities, speech issues, tremors and other central nervous system problems. There is NO TREATMENT for Galactosemia other than a restricted diet. Restricting the diet helps with some problems, but does not seem to positively affect several central nervous system issues. Research is needed and EXTREMELY UNDER FUNDED!!!! Galactosemia is considered an ORPHANED DISEASE; meaning there is little funding, government or otherwise. It is up to the parents to raise funds!
Grant Michael Wilburn is a Wilmington resident born in January of 2007. Grant has Classical Galactosemia. Grant is doing well, but research is needed to help him continue to thrive. All proceeds will benefit research, education and support of families dealing with Galactosemia. These donations are NOT for Grant’s direct medical care.