It has been a couple years since we last participated in Great Strides. But we are BACK...and it will be better than ever, especially with YOUR help!
Update on the inspiration and the stars of TEAM SISTERS:
The girls are doing amazing! Aria is 10 years old and full of spunk, sass and has the cutest smile and dimples. She is in 4th grade and loves her teacher and learning math, reading and science. She is dancing all the time at Project 520 Dance. She is so strong and brave and isn't afraid to try new and scary things (like doing a back tuck!). She loves to be creative, loves mac and cheese and ferrero rocher chocolates. Isabelle is 16 years old and gorgeous, so funny and sarcastic and has the best laugh. She is a high school sophomore and loves the campus and freedom that high school offers. Her favorite classes are theater and english. She is on pomline and LOVES cheering on her school. She is dancing at Project 520 Dance. She loves to move, perform and express herself through dancing. She is an inspiration and full of grace and loves laughing so much that we are all crying. Her favorite foods are bread (lol!) and mac and cheese and she loves dancing!
Sounds pretty normal, right? We try to keep things as normal as we can but...they both have cystic fibrosis. What is cystic fibrosis? Technically speaking it is a genetic life-shortening disease that affects the lungs and pancreas and causes mucus to be thick and sticky causing persistent lung infections and limits the ability to breathe. But according to my kids...CF just sucks. So while we see healthy, active girls on the outside, their bodies are fighting to BREATHE every minute of everyday.
What you don't always see is...
-the pills they take everyday to stay healthy (over 3,600 in 1 year)
-the breathing treatments they do twice a day (2,800 breathing meds in 1 year and that is when they are healthy!)
-the 20 minutes they spend twice a day strapped to a vest that shakes and squeezes the mucus out of their lungs (28,800 minutes in 1 year)
-the clinic and doctors appointments they go to every 3 months for 3 hours at a time
-the blood draws, xrays, ecgs, throat swabs and pfts yearly and sometimes monthly
-the salty, high fat foods they have to eat to keep weight on and not get dehydrated
-the fear of catching a cold, a cough that goes on too long, being around another person with cf
It is a lot but these girls are rockstars. Is it all sunshine and rainbows...No! There are tears (especially when there is a throat swab involved), there is compaining (why they can't go in a jacuzzi with their friends), there are fears but we all work through it the best we can.
There has been a lot of HOPE the last couple of years in the CF world. Trikafta came out and changed the lives of so many people. Trikafta is three different medicines (one being kalydeco that the girls have been on for years) and it targets the CFTR protein defects in the cells. The meds all work together to keep the proteins open longer and more proteins can reach the cell surface. This medicine is a life changer.
In October 2019, Isabelle was one of 250 people in the US and one of the youngest participatants to be invited to take part in a clinical trial. She took her first dose of Trikafta on January 29th, 2020 and it was 10 days of the "purge". My girls have always been pretty healthy and do not cough up mucus unless they are sick. But this was so different...she was purging mucus for 10 days straight from every little part of her lungs. She was exhausted, had a rash, did not sleep well but on the 11 day that all changed. She had so much energy, the coughing and the "purge" stopped, and she said she could BREATHE so much deeper. It has been 24 months since her first dose:
-2,160 trikafta pills
-38 clinicial trial appointments that are 4 hours long each
-38 blood draws (about 306 vials of blood)
-20 sweat tests
-38 pregnancy tests
-11 COVID tests
and she has not been sick (except for 3 days with COVID). She is so much more active. She has gained 20 pounds and is now 5'5. She feels great!
There is HOPE in the CF Community with this medicine. This medicine will help 90% (about 27,000 people of the 30,000 in the US) of the cf population that are 12 and up right now.
Aria was able to start Trikafta on October 11th, 2021. She has been doing great so far with a little bit of a cough and purge. We are so grateful to have this medicine available for the girls!
This could not have happened without YOU! All the fundraising, volunteering, support, hugs, and love that you sent to our family and the CF Foundation have been so appreciated and have helped the CF community so much. YOU have helped!
Please check out our YouTube video for 2021: https://www.youtube.com/watch?v=_pMp_mjNM3Q&t=8s
Please consider joining Team Sisters this year! We will be selling amazing Team Sister shirts and having a fundraiser mid-April!!
1. Buy a Team Sisters t-shirt here: https://www.customink.com/fundraising/teamsisters22?utm_campaign=desktop-post-launch-v3&utm_content=teamsisters22&utm_medium=social&utm_source=copy-link
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.