As many of you know, our son Adam has a rare disorder related to Cystic Fibrosis called CRMS. Since he was diagnosed at 2 weeks old our family has become involved with the Cystic Fibrosis Foundation. We have raised over 125K with help from friends like you!!
Please join us this year by either walking along in Amherst on Saturday, May 20th or making a contribution of any amount to Adam's Apples.
For those not familiar with Adam’s story please read more below.
Welcome to our Great Strides Page!
Why do we stride?
As you all know, when our son 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 12 year old who still loves HOCKEY!
After Adam's diagnosis we knew we needed to get involved. When I received that initial call from our pediatrician I did what anyone would do and searched the Internet to try to learn more. What a mistake that was! I 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 - I decided call our local CF Chapter and see what I 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 our involvement in CFF is growing. During that time our Adam's Apples walk team has raised over $135,000!! I
n 2014 I joined the board of the WNY Chapter of the Cystic Fibrosis Foundation and last year had the opportunity to attend the National Leadership Conference on Cystic Fibrosis. What an amazing experience!
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?
Adam is extremely lucky. CFTR, or Cystic Fibrosis Transmembrane Conductance 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, a statistic I learned at the conference that took me by surprise. 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 do can help so many more than just Adam. It was said to me that we joined a marathon during the last few miles. Others have been on the course since the beginning, but I was 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.
Are you ready to join me on this fight? And those of you have have been fighting along side me...are you ready to push harder? Here's what you can do:
Spread the word - we've received many generous donations from family and friends year after year but we need to grow our circle. If each of you ask 3 of your friends to help it can really make a difference.
Participate in a walk - join us in Amherst, NY on Saturday, May 20th or somewhere closer to you.
If you want to learn more about anything I would be happy to share. They say everything happens for a reason and I really feel that way. This has given us a purpose in life. We could be a part of changing history.
Thanks for your continued support.
Jenn (and Rob, Natalie & Adam)
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