I am writing to you during a very difficult time and in what seems to be a very different World filled with fear and uncertainty of what each day will bring. I am writing to thank you ALL and to share a very interesting story of enlightenment from our family. You know that we have been fundraising for almost 14 years now for Cystic Fibrosis and to find a cure. You have helped us not only financially towards our efforts in Great Strides Walks but spiritually in prayer and ALWAYS through the many phone calls, texts, cards/letters, e-mails and SO MANY HUGS when together, WE lost count! Back in the fall the FDA approved the new drug TRIKAFTA for Greg’s genetic mutation Delta F508 and we went through ALL channels of Doctors’ letters, Pre-Authorization letters, etc...ALL DENIED by our insurance. I even got the C.F.F. people involved and they suggested that I write a GUT-PUNCH letter myself explaining our desire for them to PLEASE consider covering the drug to save our son. I was told whom at the Union to speak with and she told me the guidelines of how the letter should be written and where to send it. I heard from her within 3 days that she got them to approve it without it even needing to be presented to the Board of Directors. She said that the letter was one of the FINEST letters that she had EVER read.
Greg started the medication on March 17th, St. Patrick’s Day and felt a difference within the first 4 hours of the first dose! We are THRILLED and can’t tell you HOW MUCH YOUR LOVE AND SUPPORT IN ANY WAY, SHAPE OR FORM HAS MEANT TO US FROM a prayer and UPWARDS of ANY dollar amount! We know that our current world has so many that are out of work and have no idea how to pay for day to day bills so we are NOT ASKING for donations at this time. We are uncertain IF we will EVEN be able to participate in the G.S. Walk for a Cure this year anyway! It is scheduled for Sunday, June 7th and it will return to Adelphi University in Garden City.
I will share our G-Man Group page in case things change in the coming weeks and IF the powers that be decide it IS SAFE to gather, then we WILL participate in CELEBRATION to FINALLY be able to GATHER TOGETHER! The deadline for donations is December 31st anyway and we would HOPE that life will be somewhat back to a new normal by then if people can and choose to make a donation to help the next drug to help another gene mutation group of CFers. G-Man Group and my personal page is: http://fightcf.cff.org/goto/G-manlcharkowick and currently and for safety reasons they ONLY want donations through the webpage and are not accepting personal checks since germs can live on paper surfaces!
IMPORTANT NOTE ON ATTENDANCE AT FOUNDATION EVENTS:
Updated July 5th, 2023
The CF Foundation is committed to ensuring the health and wellbeing of individuals attending Foundation events. Individuals attending CF Foundation events must abide by the Foundation's Event Attendance Policy www.cff.org/attendancepolicy, which includes guidance for event attendees living with cystic fibrosis.