My grandson Andrew has had CF since birth.
Cystic fibrosis is a disease that affects the respiratory and digestive systems. Not too long ago, most children with CF didn’t live long enough to attend elementary school but now, the age of people with CF continues to increase into adulthood. Because of the money provided through the foundation, progress has been made in the past few years in the field of genetics. A new genetic drug treatment, Orkambi, was recently approved for use in patients 6 years and older and Andrew is now six years old so he began this treatment right after his 6th birthday. The downside, of course, to this treatment is that it is new and not produced in great quantities so it costs a LOT - $24,500 PER MONTH! Fortunately, my daughter’s insurance covers the cost of this treatment.
On May 20th, I will be walking with “Andrew’s Army” in the Great Strides event here in Richland, raising money and awareness for the CF Foundation. I have set as my goal to raise $500 and I am asking you to help me reach my goal by joining me as a walker and/or making a contribution. Your support will help fund vital CF research and medical programs helping to find a cure for Andrew and all others with the disease.
Please consider making a donation of any amount that you can afford. Since I am enjoying retirement, the best way you can support me this year is by making a secure donation online: simply go to www.cff.org/GreatStrides, click on ‘Donate Now,’ and enter my name as the walker (Tom Taylor – in Tri-Cities) and you can make a donation to support my efforts to find new treatments and a cure for cystic fibrosis.
I will be grateful for any donation received and I appreciate your support and generosity. Here is a picture of Andrew when he received his first shipment of Orkambi– he is a bit thin but otherwise healthy. He also continues to have gastrointestinal issues and still must receive most of his food and many of his medications through his g-tube although he is eating more and more by mouth now.
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IMPORTANT NOTE ON ATTENDANCE AT FOUNDATION EVENTS:
Updated July 5th, 2023
The CF Foundation is committed to ensuring the health and wellbeing of individuals attending Foundation events. Individuals attending CF Foundation events must abide by the Foundation's Event Attendance Policy www.cff.org/attendancepolicy, which includes guidance for event attendees living with cystic fibrosis.