Hi, I have cystic fibrosis (CF), a genetic disease that affects the lung and digestive system. Please help me to stay as healthy as possible for my beautiful little 10-month-old 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 last July but is doing great. She will be attending this year's Great Strides so anyone who joins Team Storm will have a chance to meet her! :)
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 24 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.
In other news, Jessica and I bought a house in Stoneleigh, which is just a mile south of my alma mater Towson University. I feel fortunate to be alive (and fully vaccinated!) and feeling as healthy as ever due to Trikafta, an incredible drug that I started taking two 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 48. :)
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 26 (registration at 5:30; walk at 6 pm) at M&T Bank Stadium! Can't wait to walk with Jessica, Mia and all of my friends in person and see the CF Community after a Covid hiatus.
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!