Join the Matt Pack and help us change the reality of cystic fibrosis once and for all.
We are making a difference!!
Dear Family and Friends,
As most of you know our son Matthew was born with Cystic Fibrosis, a life-threatening genetic disease of children and young adults. Cystic Fibrosis (CF) causes the body to produce a thick sticky mucus. In the lungs this mucus creates a breeding ground for bacteria resulting in dangerous infections and chonic lung damage. It also affects the digestive system as well as other areas in the body causing multiple complications to the victims health and quality of life. 10 million Americans are symptomless carriers of the defective gene that causes CF( thats 1 in 30 people). It can run in families undetected for generations. The help you give today can make the difference for a loved one in your future. In 1955 children born with CF rarely lived long enough to attend kindergarten. Today, thanks to advances in science funded by people like you there are amazing new modulator drugs that are changing the lives of some who fight this horrible disease, but there are other precious individuals these drugs do not help... and it is not a cure! While we are incredibly grateful for the current breakthroughs in science, we still live with uncertainties for the future, and many still live in the reality that was Matt's not long ago. A reality that means taking handfuls of pills every time they eats just so they can digest food. In addtion to that there are antibiotic, special vitamins, inhaled medication and chest physical therapy multiple times daily to keep lungs clear of life threatening mucus. A reality that includes weeks and sometimes months of continuous IV antibiotics and extended hospital stays, (just imagine that in a COVID world). It's a reality of being hooked to a feeding tube 8-10 hours every night to recieve the nutritional supplements the body needs to keep up with it's extra caloric demands. A reality that means frequent doctor visits, lab draws, extra immunizations, X-rays, CT's Nasal surgeries and yes, even lung transplants. A reality that The Matt Pack will continue to fight to change until a cure is found and we can ALL live free of this hiderous monster we know as cystic fibrosis.
That is why this May, and every May to come my family and I will be taking "Great Strides" to see that Matthew and every other child and young adult like him have every possible opportunity to keep them healthy until that day when CF stand for "Cure Found".
YOUR HELP IS CRITCAL!
The Cystic Fibrosis Foundation is the leader in the search for a cure. Nearly every CF drug available today was made possible because of foundation support.... support that comes from events like Great Strides and people like YOU! Together we have the power to change the reality of Cystic Fibrosis. PLEASE join our fight. Below are a few options in which you can help. If I could ask one other thing, it would be great if everyone reading this could pass it on to their friends and family. It has been said in the CF community that "money buys science and science buys time". I for one can not think of a greater gift.
So from a mother's grateful heart "Thank You",
Mary Pozsgai and the Pozsgai Family
Ps. If you would like to keep updated on how things are going for him you can join his caringbridge web page at www.caringbridge.org/visit/matthewpozsgai
IMPORTANT NOTE ON ATTENDANCE AT FOUNDATION EVENTS:
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 help minimize the risk of COVID-19, 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.)
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.
Please be advised certain localities and venues may require you to be fully vaccinated and show proof of vaccination. We will communicate these requirements in event communications.
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 are feeling ill or have been recently exposed to COVID-19.
We cannot guarantee that all people in attendance at the event, including participants, sponsors, volunteers, vendors, or others, have been fully vaccinated.