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!
Due to the COVID-19 pandemic, indoor events sponsored by the CF Foundation are strictly prohibited at this time. Scheduled outdoor events must adhere to strict requirements to minimize the risk of COVID-19 infection. Events may be subject to change at any time based on guidance from the Centers for Disease Control and Prevention and local health officials.
IMPORTANT NOTE ON ATTENDANCE AT OUTDOOR FOUNDATION EVENTS:
To minimize the risk of COVID-19 infection, attendees at CF Foundation events must adhere to the following requirements:
Practice physical distancing and maintain at least a safe 6-foot distance from persons outside of their household at all times
Face masks strongly encouraged and expected to be worn in accordance with local guidelines. (Note, children under two years of age should not wear masks due to safety concerns and therefore should not attend CF Foundation events where there is risk of interacting with someone outside of their household.)
Follow basic infection, prevention and control practices by regularly washing hands with soap and water or with an alcohol-based hand gel, covering your cough or sneeze with a tissue or your inner elbow.
Persons with CF should consult their physician before participation in any in-person event as they may be at an increased risk for severe illness from COVID-19. People with CF should maintain a safe 6-foot distance from persons outside of their household at all times.