Welcome to my Great Strides Page!
Why do I stride?
As most of you 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 9 year old.
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.
9 years later Adam continues to be healthy and our involvement in CFF is growing. He eats, sleeps and breathes hockey! During that time our Adam's Apples walk team has raised over $145,000!! In 2014 my daughter-in-law joined the board of the WNY Chapter of the Cystic Fibrosis Foundation and now serves as the Vice Chairman.
With Adam doing so well it would be easy for us to get complacent, give up our fight. Maybe Adam won't ever get sick and how much can we really do anyway?
Over the past few years there has been unbelievable progress with the release of the triple combo drug Trikafta which has given patients amazing results. Adam is not at a point where he needs medication, but if/when he does, it will be ready. The fight is not yet over, we need a full cure for everyone and that is why we are still walking every year!
These past couple of years have been very difficult for everyone due to the Covid-19 pandemic but especially for non-profit charities. The CFF has seen many of the main fundraising events cancelled due to the pandemic which makes the Great Strides virtual walk even more important towards reaching our goal to find a cure. This year we hope that all of the fundraising events will be held "in person" and back to as close to normal as we can hope for.
Thank you for your continued support.
Help me reach my fundraising goal by donating to my Great Strides fundraising campaign. Your gift will help add tomorrows to the lives of people with cystic fibrosis by supporting life-saving research and medical progress. Your gift is 100-percent tax deductible.