Welcome to my Great Strides Page!
Since our son, Adam, 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 May 22nd or making a contribution of any amount to Adam's Apples.
Why do we stride?
When our son, Adam, was 2 weeks old his newborn screening discovered he had 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. He goes to the Lung Center at Women's & Children's Hospital every 6 months for evaluation and testing. The good news is, so far, his test results have always come back negative and his health is that of a normal 12 year old.
After Adam's diagnosis, we knew we needed to get involved. When we received the initial call from our pediatrician, we did what anyone would do ... we Googled it! 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 median age for CF patients is almost 40; that a cure is close - 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 our involvement in the CFF is growing. During that time our Adam's Apples walk team has raised over $150,000!! In 2014, Jenn joined the board of the WNY Chapter of the Cystic Fibrosis Foundation and had the opportunity to attend the National Leadership Conference on Cystic Fibrosis.
This past year, our daughter, Natalie, attended the Teen Advocacy Conference in Washington, DC with her friend, Bailey. They met with representatives of 4 members of Congress to petition for signing the Pasteur Act, a bill to help funding of drug development efforts. They were both was recently honored as the WNY CFF Chapter Advocates of the Year.
Our involvement has become a family affair - my mom volunteers at the office, my dad takes pictures at the walk, my brother, Steve, and I joined the 65 Roses Golf Tournament Committee...the list goes on.
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 will help Adam's mutation combination - F508del and 1152H. 5% of CF patients have Adam's faulty genes, a statistic Jenn learned at the National Conference that took us 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 us that we joined a marathon during the last few miles. Others have been on the course since the beginning. Thankfully, Adam was born when we 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 20. Or join a walk in your area - Chicago, Connecticut, Wisconsin...we could make Adam's Apples a national team and take Adam's story from coast to coast.
If you want to learn more about Adam, CF, or our involvement, 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.
Rob, Jenn, Natalie, and Adam
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IMPORTANT NOTE ON ATTENDANCE AT FOUNDATION EVENTS:
Updated June 15, 2022. To reduce the risk of COVID-19 the Foundation is taking steps to host safe events for our community. Please be advised that events may be subject to change at any time based on guidance from the Centers for Disease Control and Prevention and local health officials.
To minimize the risk of COVID-19 infection, we ask that attendees at CF Foundation events follow these steps:
FOR YOUR SAFETY AND THE SAFETY OF OTHERS: