Dear Family & Friends,
The Cystic Fibrosis Foundation (CFF) has made remarkable progress over the years because of the loyal and generous donors and volunteers who dedicate precious time to help advance their mission - to cure cystic fibrosis and to provide all people with the disease the opportunity to lead full, productive lives by funding research and drug development, promoting individualized treatment, and ensuring access to high-quality, specialized care.
Once again this past March, Fran and I had the privilege of attending the CFF Volunteer Leadership Conference, and like every other year, the progress continues to astound us! Each year, we share with you the amazing and incredible progress made through the CFF because of the kindness of people like you! This year is no different.
Currently, there are two possible treatments that have shown great potential, but because they are so similar, only one will be moved forward to the FDA for approval. The new drugs are called CFTR correctors. Correctors are drugs designed to fix the defective CFTR protein so that it can move to the proper place on the cell surface. Once CFTR protein reaches the cell surface, ivacaftor (a previously approved drug and a component of the possible new drug) helps facilitate the opening of the chloride channel to allow chloride and sodium (salt) to move in and out of the cell. This aids the body to function more normally.
We have so many blessings. Alexandra, 28, is now 3½ years post-transplant, and by the grace of God, she continues to be well. This past September, we were blessed to witness her marry her long-time boyfriend, Alex. She is extremely healthy and happy, and together they are planning their future – what a gift!
Carley will be 23 on June 30, and is now a registered nurse working at Golisano Children's Hospital in the pediatric cardiology unit, she loves working with children. While her health is mostly stable, she continues to be hospitalized at least two times per year and must maintain her health while working and taking classes -- this is no small feat. As you can imagine, we are extremely proud of her. There is great hope that, if approved, the new drug will have life-altering changes for Carley. It is AMAZING and overwhelming to witness both young women planning their futures – something that at one time was only a dream.
With donor support and the perseverance of the CFF, there are now drugs that target the underlying cause of CF, and clinical trials indicate that, by 2020, 90% 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 CFF has had a vital impact on all those living with CF, and now includes those who have had lung transplants. They have continued their commitment towards research to better understand rejection and improve the lives of cf patients who are post-transplant.
The Annual Great Strides Walk is the CFF's largest and most successful national fundraising event. Please join us in helping to raise funds for the 2019 Southern Tier Great Strides Walk which will take place on Saturday, June 8, at 11:00 a.m. at the Steuben Trust Company in Hornell.
If you are unable to walk or raise funds, we implore you to consider sponsoring Argentieri’s Avengers. You may also create your own team, set a goal, 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 (http://fightcf.cff.org/goto/ArgentierisAvengers), 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 Alexandra & Carley and all 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!
With deepest gratitude,
Colleen & Fran Argentieri
P.S. For additional information on CF, the CFF, Great Strides, please visit www.cff.org.