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My Great Strides Story

Traci Grogan

Fundraising for Mohawk Valley Great Strides

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Traci Grogan

My grandson Eli was diagnosed with CF when he was one week old.  Both his parents were carriers of the CF gene and did not know it.  He was given a wonderful team to work with at the Golisano Center in Syracuse.  Through the generous donations of thousands of people, Cystic Fibrosis has come a long way in the past 20 years.  The outlook for those diagnosed with CF gets more promising every day.  Eli is now almost 8 years old and doing well, but many are not as fortunate.  This is a lifelong disease so please consider donating to help find a cure, so all the children diagnosed now can have a long and healthy life!  
A description of CF follows below:
 

Cystic fibrosis is a progressive, genetic disease that affects the lungs, pancreas, and other organs. There are close to 40,000 children and adults living with cystic fibrosis in the United States (and an estimated 105,000 people have been diagnosed with CF across 94 countries), and CF can affect people of every racial and ethnic group.
Cystic fibrosis is a genetic disease

People with only one copy of the defective CF gene are called carriers, but they do not have the disease. Each time two CF carriers have a child, the chances are:

  • 25 percent (1 in 4) the child will have CF
  • 50 percent (1 in 2) the child will be a carrier but will not have CF
  • 25 percent (1 in 4) the child will not be a carrier and will not have CF

The defective CF gene contains a slight abnormality called a mutation. There are more than 1,700 known mutations of the disease. Most genetic tests only screen for the most common CF mutations. Therefore, the test results may indicate a person who is a carrier of the CF gene is not a carrier.

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The CF Foundation is committed to providing a safe, inclusive, and healthy experience for individuals attending Foundation Events. Individuals attending CF Foundation events must abide by the Foundation's Attendance Policy and accompanying guidelines, which include guidance for event attendee's living with cystic fibrosis.