Great Strides Tempe is Tomorrow April 28, 2019
Most of you know our story by now. Len and I are the parents of two CF children. David passed away at 21 years of age, 26 years ago, after fighting for almost every breath until his heart lung transplant at age 18 turned his life around. It gave him a wonderful senior year in high school but after that his health began to decline once again. He did get to experience college life and was grateful for his transplant and for those "normal" months of his life.
Our older son, Mark, just turned 49 on April 1st and lives in Michigan. He has worked at Chrysler for over 25 years as an engineer, is married, and has two children. He too has Cystic Fibrosis. From the beginning his problems were always more digestive than the debilitating lung issues that plagued David. To his credit he has worked extremely hard at staying healthy and spends hours every day on treatments. He is looking forward to the approval of the new triple combination Vertex drug that is now in it's phase three trial. When he participated in the phase two trial he saw incredible results but will have to wait for approval of the drug from the FDA as he is not part of the current trial.
Mark is very active in the CF community. He just had the opportunity to speak at a CF Family Education night in Ann Arbor. Not surprisingly, his presentation was very well received as he is a very accomplished speaker, witty, organized and charming. Do we sound like the proud parents we are? You may see him some day on the motivational speaker circuit.
Your past and future support are what is going to put us over the finish line. Ten years ago we couldn't even imagine the finish line but research has made such significant strides that we are more hopeful than we've ever been.
It's always a pleasure to connect with you at this time of the year when Great Strides is on the horizon. If you are able I'd love to have you walk with us as part of Team Levine - if not your donation would be greatly appreciated and well used by CF researchers.
Jane & Len