Welcome to my Great Strides Page!
Why do I stride?
As you all know, when my grandson Adam was 2 weeks old it was discovered he had some markers for Cystic Fibrosis. After further testing he was diagnosed with CFTR Related Metabolic Syndrome or CRMS. This diagnosis is given to people who have gene mutations in the CF range but have inconclusive CF test results. For Adam this means that he needs to be closely monitored and he goes to the Lung Center at Women's & Children's Hospital every 6 months for evaluation and testing. The good news is that, so far, his test results have always come back negative and his health is that of a normal 11 year old who still loves HOCKEY!
After Adam's diagnosis we knew we needed to get involved. When we received that initial call from Adam's pediatrician we did what anyone would do and searched the Internet to try to learn more. What a mistake that was! We found old statistics and bad information. Once the doctor's at the Lung Center gave us the true facts - that tremendous advances are being made in the treatment of CF, that the average age for CF patients is almost 40, that they're close to a cure - we decided to call our local CF Chapter and see what we could do to help. Before we knew it we had our
first Great Strides team and raised about $5,000 with help from family and friends.
Fast forward 12 years. Adam continues to be healthy and ourinvolvement in CFF is growing. During that time our Adam's Apples walk team has raised over $135,000!!
give up our fight. Maybe Adam won't ever get sick and how much can we really do anyway?
Adam is extremely lucky. CFTR, or Cystic Fibrosis TransmembraneConductance Regulator, is a protein made by the “CF gene” that acts as a channel to move salt in and out of the cells. When acting normally it keeps all the fluid in your body flowing normally, particularly in your lungs, pancreas, and reproductive organs. In CF patients these fluids don't move properly, instead becoming 'sticky'. In Adam's case, his gene mutation combination causes a narrower channel in the CFTR protein. Over time build up can occur which could lead to problems with his lungs or digestive tract. That's the bad news.
The good news is that, through the fundraising efforts of the CFF,doctors have made unbelievable advances over the past few years. One of the drugs moving into the market would help Adam's mutation combination - F508del and 1152H. 5% of the population with CF has Adam's faulty genes. While sometimes we think we live in a bubble where nothing can harm our kids, we know that's not reality. One day Adam could wake up and start coughing...maybe next week or next month or next year - or maybe never. If it does happen we need to be ready for the treatments, the pills, the chest therapies. This is why we fight along with so many others for a cure.
Maybe it's a bit selfish, why we got involved. But the work we docan help so many more than just Adam. It was said to us that we joined a marathon during the last few miles. Others have been on the course since the beginning, but we were lucky enough to come in at the end. Thankfully Adam was born in a day and age where they are so close to a cure. Doctors and researchers feel its only a few years away...truly amazing.
Thanks for your continued support.
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IMPORTANT NOTE ON ATTENDANCE AT FOUNDATION EVENTS:
Updated July 5th, 2023
The CF Foundation is committed to ensuring the health and wellbeing of individuals attending Foundation events. Individuals attending CF Foundation events must abide by the Foundation's Event Attendance Policy www.cff.org/attendancepolicy, which includes guidance for event attendees living with cystic fibrosis.