Hi, I have cystic fibrosis (CF), a genetic disease that affects the lungs and digestive system. Please help me to stay as healthy as possible for my beautiful little girl by attending or donating to the Great Strides walk this Thursday! Jessica and I feel so fortunate to have Mia Lucille Storm in our lives. She's our little "Mia-cle" who was born six weeks prematurely at 4 pounds but is doing great. She is now walking and talking up a storm (even though we don't always understand her!) and will be walking with us!
Mia is named after my brother Damien (we used the middle part of his name), who passed away from CF in 1998. It's hard to believe it's been 25 years since we lost him to cystic fibrosis. He was only 22 with lung function around 20%, struggling for each breath, and yet he still managed to graduate near the top of his class at Towson University with a double major in English and Philosophy. He dragged his oxygen tank up three flights of stairs to work at a local newspaper his senior year. A great smile, a sharp sense of humor, a super smart guy who always cared about doing the right thing and helping others - whether it was volunteering in a kindergarten classroom or helping senior citizens play bingo. He will always be missed.
Also, some big news: Jessica and I finally tied the knot on April 29 on a beautiful spring day at the Evergreen Museum and Library! Mia was a big part of the ceremony and drove down the aisle in a little white remote control Land Rover. :) I feel fortunate to have such a wonderful family and I'm feeling as healthy as ever due to Trikafta, an incredible drug that I started taking a few years ago. It's a not a cure - I still have to take around 15 pills each day and do therapies but it's pretty darn close. There are days now where I can go without coughing, something I never dreamed was possible, much less being a new dad at the ripe old age of 49. :)
Trikafta only affects 90 percent of the CF population and not all can tolerate it so I'm asking you again for a donation or to walk with me to help others with CF who are desperately in need of a miracle drug like Trikafta to breathe easier. Your donations will also help to find new and even better drugs for me and the 30,000 children and adults with CF.
The walk will be on Thursday, May 11 (registration at 5:30; walk at 6 pm) at the Baltimore Zoo! Can't wait to walk with Jessica, Mia and all of my friends and maybe see an animal or two, too! :)
If you would like to join us or sponsor me, just click on the appropriate button under my picture! Whatever you can give would be very much appreciated.
Thanks once again for all of your support over the years. I hope everyone is safe and well!