February 24, 1975 was a life-changing day for our family. John finally had a definitive diagnosis – Cystic Fibrosis. He was 13 years old. Mom & Dad knew absolutely nothing about this disease & were told he would probably not live past 18! Can you imagine hearing doctors tell you your child had maybe 5 years to live?! CF is a family disease & for 21 years, it ruled our household. So until CF is eradicated from this earth, I will continue to beg & plead for your help.
The donation received from friends like you make life-changing differences for CFers & their families. The average life expectancy today is 40+. Many are living way beyond. Because of you, much progress has been made in the fight against CF. There are now THREE drugs that treat the underlying cause of the disease in MORE THAN HALF of all those with CF!!! AND there are clinical trials underway for therapies that could help bring life-transforming treatments to more than 90% of CFers as soon as 2020!!! How exciting is this!!! I hope you will take great pride in being part of these amazing achievements & donate once again to my GREAT STRIDES campaign!
Most of you who receive my letter never had the privilege of knowing John. Many of you were blessed to call him friend. He was definitely a force to be reckoned with! What I’d give for him to know Rusty & PresleyAnn - The 3 of them would be the best of buddies! He loved Angela like no other & would be so proud of the young woman she has become. He antagonized her like crazy! I can only imagine the phenomenal relationship they would have had John lived. She was only 9 when he died.
John did not have the ending we’d so prayed for. His fight with CF ended August, 29, 1996 – almost 23 years ago – 16 days after a double-lung transplant & multiple surgeries. He was 34 years old. Once again, our lives were changed forever.
We have come a long way, but we won’t be satisfied until there is a cure for every person with CF! I hope I can count on you to help make CF stand for CURE FOUND! What a day it will be when all those with CF can say, “I USED TO HAVE CF!!!” Thank YOU for making a difference.
Until it’s a done deal,
Page, Angela & PresleyAnn (John, Jim & Katie too!)
Gather up all your kiddos & join our team, BULLER BUDDIES, for a stride through the Zoo SATURDAY, MAY 18TH! Enjoy a fun after-party with music, food & team photos. There are also great prizes for all who fund raise! (See website for more details.) We have Buller Buddies t-shirts too! EVERY FUNDRAISER WILL RECEIVE ALL DAY ACCESS TO THE ZOO!!!
CHECK IN – 7:00 A.M. WALK BEGINS @ 8:00 A.M. CELEBRATION PARTY AFTER
Please click on the link & join our BULLER BUDDIES’ team and/or make a tax deductible donation. Every penny makes a difference. $5, $10, whatever you can to help put CF in the ground forever! http://fightcf.cff.org/site/TR/GreatStrides/147_Texas_Gulf_Coast_Houston?px=1614401&pg=personal&fr_id=7474
**** PS. 90 cents of every dollar raised goes into vital Cystic Fibrosis programs! ****
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.