We are so excited to reach out to everyone about this year’s in person walk with Team Max for Great Strides to raise money for the Cystic Fibrosis Foundation. After 2 years of virtual fundraising, we are very pleased to announce that we are back in person this year and in a new location. This year Team Max will be returning back to downtown Manhattan for the NYC 5 Borough Great Strides Walk on Sunday May 15th at Pier 16 - South Street Seaport.
As you know, our son Max was diagnosed with Cystic Fibrosis (CF) a few weeks after he was born. Max is now 16 years old and a High School Junior, and is an amazing kid with a thoughtful nature, beautiful heart and sweet disposition. This past year has been a slow return to our new normal. Max received his Covid vaccination on the day after the FDA approved them for 15 year olds because he was committed to doing his part to keep himself and his community safe. Since then, he has returned back to in person school, played on the Stuyvesant High School football team, performed in his school’s SING competition, and continued to cook and bake and improve his culinary skills. He has started looking ahead to applying for colleges focusing on culinary education.
Max has been on Trikafta, one of the new class of gene modulators, since 2021. In that time, his lung function has improved significantly and he was able to fully participate as a member of the Stuyvesant High School football team.
Max has been battling a bacteria in his lungs since September 2016. So, in addition to all his regular treatments that we have done twice a day since he was born, Max is now on constant antibiotics. He has gone through several rounds of oral antibiotics, inhaled antibiotics, and finally IV antibiotics following a short hospital stay in January 2017. Since then he has continued on constant inhaled antibiotics - taking 2 different ones in 28 day cycles. Even with all this, he is an amazingly tough kid, with a positive attitude, a great sense of humor, and loving disposition.
We realize how lucky we are. Because of YOU and the donations that YOU have made to the CF Foundation, there are specialized anitbiotics for Max to take, that specifically attack the bacteria in CF patients. Because of YOU and the donations that YOU have made to the CF Foundation, research is continuing into additional therapies, including gene therapies to finally bring treatments to everyone with CF and hopefully, one day to bring us a cure.
Infection control and antibiotic resistance are 2 of the most important issues facing the CF community and the CF Foundation is committed to address this important issue. For someone like Max who is already facing the reduced effectiveness of antibiotics in his battle against lung infections, this fight is critical, and your donations matter! In addition, 10% of the population with CF still does not have access to modulators and research must continue to not only find medicine to address the symptoms but ultimately to find the cure!!
There continues to be news about improvements in antibiotics and potential treatment options that create a new world of possibilities for Max and all the other children and adults with CF. For the first time ever there are more people with CF over 18 than under 18. The median life expectancy for someone with CF born today is 44 - already 7 years longer then when Max was born, and life expectancy continues to improve. Medications, Genetic Therapies, and advancements in lung transplants are critical pieces and your support of Team Max is helping to change Max's future and the future of so many others!
This is the 17th year for Team Max and so far we've raised over $300,000 to help find a cure. Team Max in 2021 in a virtual walk continued to raise money find a cure. We know that times are tough and we appreciate anything you can do to continue to support Max and our family as we keep fighting this battle.
Max, and all the children and adults battling this disease, need your help. Cystic Fibrosis is a devastating genetic disease that affects tens of thousands of children and young adults in the United States. Additionally, more than 10 MILLION Americans carry the defective gene that causes CF. Research and care supported by the Cystic Fibrosis Foundation is making a huge difference in extending the quality of life for those with CF. However, we continue to lose precious lives to CF every day. That's why your help is needed now more than ever to ensure that a cure is found sooner - rather than later.
Together, we can make a difference in the lives of those with CF! Thank you for supporting the mission of the CF Foundation and GREAT STRIDES! We won't stop UNTIL IT'S DONE!!
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.