Hello Friends and Family,
Our walk is Sat. April 27th, 2019 this year. Please remember that any amount that you can donate, is greatly appreciated. As always 90 cents of every dollar goes to finding a cure.
There are approximately 30,000 Americans living with cystic fibrosis. They are moms, dads, sisters, brothers, daughters, sons, friends and co-workers who struggle every day just to breathe. I walk for them and hope you will support me in my efforts.
Real progress has been made in the research for a cure, but people with CF are still cut far too short. There still is no cure for this devastating disease. Last year our team raised over $5,000.00 which give us a sense of purpose and how we can help Michael and Julie beat this silent disease. An update: This year Julie tried the bowling team and really seemed to like it. Julie is also playing Lacrosse this year. She has all honors classes and has continued to keep good grades, which is awesome in my mom book. She has cultured pneumonia 3 different times so she is now adding Cipro and Tobi to her daily routine for the rest of her life. (Thank god only every other month). Michael continues to decrease in his small airways, going from 92% down to 85% this month. Which is a little concerning for us. He had his feeding tube removed at the end of last summer but he is struggling to maintain weight, He is also fighting acne conglobata which is rare but I blame CF. This is going on three years with severe scarring on his back and chest which is not covered by insurance to have laser surgery. Michael has started Ocean Community College and plans on transferring to Rutgers or Stockton in the near future.
But on a wonderful note, Thanks to all the research and medical advances from Cystic Fibrosis Foundation Michael and Julie are on the new CF drug that is geared to their gene mutation Delta 508. This should help with weight gain, lung function and give them more years to live. They have started this new drug and their ige levels have started to drop which is good news! I just wanted to thank you personally and let you know that your donation does not just pay a big organization with a fancy name but research is being done and there has been medical advances since Julie and Michael have been diagnosed.
Please support me!
Your gift will help add tomorrows to the lives of people with cystic fibrosis by supporting life-saving research and medical progress. Your gift is 100-percent tax deductible.