My Xtreme Hike Story
June 26, 2022 marked the 25th anniversary of our children Matt and Melissa's diagnosis with cystic fibrosis (CF). As you may know, CF is a genetic disorder that affects the lungs, pancreas, liver, sinuses and other organs. In 1997, when our family first learned this disease affected our kids, the average age of survival was 18 years.
The Cystic Fibrosis Foundation has made tremendous progress happen since then. Now there are treatments for managing and living with CF as a serious chronic disease rather than a certain childhood killer. Most recently, on October 21, 2019, the FDA approved Trikafta®, a highly effective therapy which treats the underlying cause of CF. This one miraculous drug, developed by the CF Foundation, has already had profound implications on life expectancy and the quality of life for about 90% of the CF population, including Matt and Melissa. The average age of survival is now 50 years. It is truly amazing.
For the remaining 10% of CF patients, however, the fight for hope goes on. While real progress has been made with the approval of Trikafta, there is no similar highly-effective treatment for this segment of the CF population. Many young lives are still cut short. And of course, for older CF patients, there is no way to undo previous damage to the lungs and other organs. Bottom line: we have come incredibly far, but we are not done. The Cystic Fibrosis Foundation, and our family, will not stop working until all people with cystic fibrosis have a cure. We will not leave anyone behind.
For those of you wondering about our family’s annual Weiner Roast fundraiser held in our yard, we need to put it on hold again this year because of construction in our house. So we have decided to jump into a new fundraising event inspired by Janet's daily hikes with our dog Penny: Xtreme Hike! During the weekend of September 30 - October 2, 2022, we will be joining other hikers for a 15 mile day hike at Mountain Lake Lodge Resort, Pembroke, VA. Our goal is to raise $50,000, and we would really appreciate your support. To make a donation, just click on the DONATE button.
Because of your past generosity at Weiner Roast, Great Strides and Casino Night, our family has celebrated so many joyful life events (like Matt and Abby's wedding, which is the cover photo on our Team Weiner page!) We are deeply grateful for your help over all these years. We are truly excited about this new event!
Our heartfelt thanks,
Janet & Harvey Weiner