UNTIL IT'S DONE DONE
Dear Friends & Family,
We hope you will support us this year as we recently were jolted back to the reality of living with cystic fibrosis. A young person dying, recognizing the 30th birthday of another friend's daughter in heaven, a dear one diagnosed with CF, and a trip to the hospital are all it takes to remember the fragility of life with CF. I apologize for the length of this year's letter, but I ask you to take the time to read it. I have a lot to share.
The Cystic Fibrosis Foundation is the world’s leader in the search for a cure for CF and supports a broad range of research initiatives to tackle cystic fibrosis from every angle. Their focus is to support the development of new drugs to fight the disease, improve the quality of life for those with CF and ultimately find a cure for all with the disease. By becoming a member of our team and donating, you are joining a growing group of people driven by a dream that one day, every person with cystic fibrosis will have the chance to live a long, healthy life. You can help us reach that goal! Together, we are changing the lives of people like our son Matt and many of our friends within the CF community.
Just 50 years ago, there were no real therapies available for people with CF. TRIKAFTA is a transformative medicine that has the potential to change CF treatment as we know it. We have seen it improve patients' daily lives, a feat that is monumental for patients with cystic fibrosis. We anticipate that this drug – along with the many therapies in development to manage other gene mutations – will improve patients' long-term survival and quality of life just as dramatically. Today, only patients with one or more Delta508 mutations are eligible for TRIKAFTA. Due to a push in genetic testing in the last decade, we know which gene mutations most current patients have. Matt is fortunate to be taking TRIKAFTA, which has improved his lung function and the way he lives his life.
Although people with cystic fibrosis are living longer and more fulfilling lives, thanks in part to specialized care and a range of treatment options, about 10 percent of people with cystic fibrosis in the U.S. have rare mutations. The Cystic Fibrosis Foundation is aggressively pursuing potential treatments for people with CF who have “nonsense” and other rare mutations. These CF patients do not benefit from drugs known as modulators, which correct the malfunctioning cystic fibrosis transmembrane conductance regulator.
Even after over 25 years of fundraising for CF, I was shocked to discover a friend of mine was diagnosed with cystic fibrosis at age 57. She has a nonsense mutation. It stopped me in my tracks! I realized that I need to work even harder to make sure there is a treatment for all people with cystic fibrosis. We dedicate our walk this year to those with nonsense mutations.
Of course, I cannot end our letter without updating you on Matt’s health. Matt continues to benefit from TRIKAFTA and is enjoying his beautiful family. His lung function remains high, but he still must be very careful to protect his body. CF is challenging and at times he struggles with various issues. Matt and Olivia are wonderful parents to their precious, almost 2-year-old daughter Harper. She is a little doll and we are blessed with babysitting her two days a week. We hear of more and more CF families having babies with IVF, something unheard of when Matt was diagnosed almost 30 years ago.
To our CF family, the precious ones we have lost, and those who still struggle, I assure you, our award-winning team’s commitment remains strong. Thank you to our many friends and family members who, 28 years ago, invested in a young boy’s future. Together we remain committed to the work to find a cure for all.
You are invited to participate in the Cystic Fibrosis Foundation’s Great Strides walk on May 20, 2023. The 2023 Albany Great Strides will have a new location this year: The Colonie Mohawk River Park! It is located at 71 Schermerhorn Road in Cohoes, about 2.5 miles north of the Latham Traffic Circle. The 3-mile walk will be on a trail with a packed surface (not paved, but strollers and wagons should be fine). There is a pavilion, playground, and beautiful views throughout the park. We hope you will join us. If you are not comfortable walking, we welcome you to donate.
Please support us and help us reach our fundraising goals by donating to our yearly fundraising campaign. Your gift will help add tomorrows to the lives of people with Cystic Fibrosis by supporting life-saving research and medical progress. Your gift is 100 percent tax deductible. If you have a donor-advised fund, we would be honored to receive a distribution from your fund. Please alert me so I can properly thank you.
Deb and Art Friedson
Kindly consider a sponsorship
Platinum Rose sponsor $5000____
Gold Rose sponsor $2500 _____
Orange Rose sponsor $1000 ____
Purple Rose sponsor $500____
Red Rose sponsor $250____
Yellow Rose sponsor $118____
White Rose sponsor $54 ____
Pink Rose sponsor $36____
Your Name ______________________
Simply mail this form and check payable to:
The Cystic Fibrosis Foundation
455 Patroon Creek Blvd, Albany, NY 12206
Please add note
Walkers Deb & Art Friedson 4177894
Walkers Matt & Olivia Friedson 4177894
Great Strides Albany 2023