WOW!!! That is the word that sums up the last 18 months. So many changes have happened through this pandemic... and all have taught us so much! As always, my highest priority, is to continue to keep Karsyn safe from all illness, but most importantly this deadly virus. She has soared and become sooooo much more technically savy since she has been in school "virtually" since March 2020. Her 6th grade year (100% online), she has maintained straight A's and her attitude has been, as it always has, easy going and ready for the challenge! She is the epitamy of a rock star and warrior!
As most of you already know, Karsyn was able to start to taking Trikafta a week after her 12th birthday this past September. Trikafta is the "Miracle Drug" (FDA approved in Oct. 2019) that corrects the underlying case of Cystic Fibrosis for about 90% of those suffering from CF with certain gene mutations. Within a week her cough (which she has had her entire life) was almost non-existent. Her weight gain over the last 6 months has been absolutely phenomenal! Karsyn has always had issues gaining and maintianing a healthy weight. We can kiss those days GOODBYE!!! You all need to understand that this drug is here and accessible today SOLELY because of the work EACH AND EVERY ONE OF YOU have done over the last 12+ years that we have been fundraising!! We are FOREVER GRATEFUL!! However, our fight is NOT YET OVER! This is by no means a cure AND we still have 10% of those suffering from CF that need our help!
We are sad to once again have to forego an actual walk this year on the beach due to the CDC guidelines and the pandemic. However, we will continue to ask for your prayers during this time. We are also still faithfully asking for donations from friends and family now and until the end of the year. We still have a lot of work to do to be sure that all that suffer from this disease are offered any and all therapies that are still being researched in labs around the world in collaboration with the Cystic Fibrosis Foundation.
Join our team and help us get one step closer to a cure for cystic fibrosis – a rare, genetic, life-shortening disease that makes it difficult to breathe.
With supporters like you by our side, the Cystic Fibrosis Foundation continues to lead the way in the fight against CF, fueling extraordinary medical and scientific progress. The life expectancy of someone born with CF has doubled in the last 30 years. Despite this progress, many people with CF do not benefit from existing therapies either because their disease is too advanced or because their specific genetic mutations will not respond. They are moms, dads, sisters, brothers, daughters, sons, friends, and co-workers who struggle every day in the face of this devasting disease.
To participate, just click on the "Join our Team" button. From there, you can make a donation and start fundraising.
By joining our Great Strides team and making a donation, you will be part of a tenacious and passionate group of people committed to ending this disease. Together, let’s make CF stand for Cure Found!
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.
FOR YOUR SAFETY AND THE SAFETY OF OTHERS:
For the health and wellbeing of the CF community, those eligible to be vaccinated are required to be fully vaccinated to join us in-person for the event. If you are not fully vaccinated, we invite you to participate virtually if that option exists.
We do not plan to ask for you to provide proof of vaccination. We are, however, counting on the fact that you appreciate the potential consequences of exposing members of the CF community to COVID and will abide by this requirement.
We cannot guarantee that all people in attendance at the event, including participants, sponsors, volunteers, and vendors, have been fully vaccinated.