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 June 15, 2022. To reduce the risk of COVID-19 the Foundation is taking steps to host safe events for our community. Please be advised that events may be subject to change at any time based on guidance from the Centers for Disease Control and Prevention and local health officials.
To minimize the risk of COVID-19 infection, we ask that attendees at CF Foundation events follow these steps:
Where mandated, practice physical distancing and maintain at least a safe 6-foot distance from persons outside of their household.
Face masks are encouraged and should 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 only attend outdoor CF Foundation events where they are able to distance and stay within their family group.) NOTE: For events hosted by the CF Foundation, masks will be made available on-site, when possible.
Follow basic infection, prevention and control practices by regularly washing hands with soap and water or with an alcohol-based hand gel, and by 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.
For indoor events, it is CFF policy to invite only one person with CF to be in-person at the event at a time. For outdoor events, people with CF should maintain a safe 6-foot distance from persons outside of their household at all times.
FOR YOUR SAFETY AND THE SAFETY OF OTHERS:
For the health and well-being of the CF community, we strongly encourage that participants be fully vaccinated and have received the CDC recommended booster shot when joining us in-person for the event.
Certain CF Foundation events may require vaccination to attend.
Participants are strongly encouraged to test within 24 hours prior of arrival at an event or meeting, or as close as possible to the time of departure (if traveling).
Please be advised certain events, localities, and venues may require you to be fully vaccinated and show proof of vaccination. We will communicate these requirements in event communications.
For events where the CF Foundation requires full vaccination, meeting participants must be fully vaccinated against COVID-19 at least two weeks before the date on which you will first attend the meeting. Registration and attendance at such events may require agreement to health and safety protocols and/or COVID liability waivers.
We are counting on the fact that you appreciate the potential consequences of exposing members of the CF community to COVID-19 and will not attend an event if you test positive, or have been recently exposed to COVID-19.
We cannot guarantee that all people present at the event, including participants, sponsors, volunteers, vendors, or others, have been fully vaccinated.