Dear Family & Friends,
First and foremost — thank you for visiting this page to learn more about cystic fibrosis and the affect it has on mine and so many others lives!
Second, we are beyond thrilled to share with those of you who don’t know, Alexandra, 28, and 3 ½ years post-transplant, is doing terrific and was married to my now brother in-law, Alex, this past September! She is extremely healthy and happy and continuing to plan her future! Without the lifesaving progress made over the years, we would have lost her back in 2015 to this devastating disease. Our hearts are full watching her happily live her life and plan for her future.
Now onto myself, almost 23 years old an living a full, happy and healthy life! Over the years i have definitely benefitted from the incredible progress with medications and therapies founded by the CFF. Fortunately my health has remained very stable since participating in and taking some of the new medication that has become available. I have been an RN for almost a year now and more recently began my career as a pediatric nurse at Golisano Children’s Hospital!
Because of support from donors like you, more than half of the individuals with CF can now benefit from disease-modifying therapies and that number continues to rise. With the recent approval of the drug, Symdeko, there are now three drugs that target the underlying cause of CF, and clinical trials of next generation therapies indicate that, by 2020, about 90 percent of people with CF could have approved, highly effective treatments. That is simply incredible and all because of people like YOU!
While there is much to celebrate, we cannot stop until there is a cure for all with CF. Still,we continue to lose thousands of children and young adults living with this horrific and unrelenting disease. While there have been life improvements, we have not reached the finish line, and we cannot do it without your continued support.
Please let us remind you of some facts of cystic fibrosis: (These are just a few)
CF is the #1 genetic disease
One is every 32 individuals is a carrier of the cf gene
CF is a progressive disease
The defective gene causes thick mucus buildup in the lungs, pancreas, and other organs in the body
It causes persistent lung infections and limits the ability to breathe, causing extensive lung damage, and eventually respiratory failure, and death
In the pancreas, the mucus prevents the release of digestive enzymes that allow the body to break down food and absorb vital nutrients causing failure to thrive
CF requires daily chest physical therapy treatments -- a minimum of an hour each day (a half hour in the morning and a half hour in the evening)
CF requires taking numerous medications & pills each day (between 20 to 50 pills)
CF requires oral & intravenous antibiotics and numerous hospitalizations; often times surgeries
30,000 individuals in the US are afflicted; 70,000 world-wide
The impact the CFF has had on all those living with CF has been and continues to be vital, including those who have had lung transplants. The CFF also continues its commitment towards research to better understand and improve lung transplantation for people with CF.
I will continue to share my struggles and journey with this ravaging and unrelenting disease because it is important! Important because it is living proof that with the assistance of others, the CFF is finding a way to fight the war against CF. It is now time to win the war, but it cannot be done without you!
Keep in mind CF is considered an “orphan disease,” a condition that affects fewer than 200,000 people nationwide. Because of this, the CFF does not quality for nor do they receive any type of state or federal funding. They rely solely on the support of private donations to buy their research, in turn finding life-changing treatments. They continue to be a leader in the world of science – something we know we are proud of, and we hope you too are proud of what you have helped accomplish!
Great Strides is the CFF's largest and most successful national fundraising event. Please join us in helping to raise funds and participate in the 2019 Southern Tier Great Strides Walk on Saturday, June 8, at 11:00 a.m. at the Steuben Trust Company in Hornell.
If you are unable to walk, we implore you to consider sponsoring Argentieri’s Avengers. You may also create your own team and solicit gifts to support your team; it is extremely easy and a great way to raise additional funds. Making a donation is easy and secure! You may donate online at ARGENTIERI’S AVENGERS (above), or if you prefer, you may send a contribution to the attention of “Argentieri’s Avengers” at 1615 Heather Heights, Hornell, NY 14843 (checks may be made payable to CFF). Your gift has and will continue to help add tomorrows to the lives of those living with CF. Remember, your gift is 100-percent tax deductible, and don't forget matching gifts for those of you whose company participates in this program.
Thank you for supporting the mission of the CFF, Great Strides, and Argentieri's Avengers! Attached is a video of how far we have come since 2015.