This is TEAM MACKENZIES 14th year fundraising for the CF Foundation! We will be participating in the Great Strides walk on Saturday, May 11, 2024 @ Quinsigamond State Park, Worcester, MA!
Our daughter, Mackenzie was diagnosed with Cystic Fibrosis (CF) two weeks after she was born. Imagine getting a call from your doctor that your child has tested positive for CF and has an appointment the next day at children's hospital. Back then, we looked through a medical book to find out what CF was... However this did explain why our baby could not gain weight!
The next day she started Zenpep (pancreatic enzyme). At two weeks old Mackenzie was swallowing a spoonful of applesauce with Zenpep mushed into it! Within days she started to climb the charts with weight gain!
With the help of the Cystic Fibrosis Foundations venture, philanthropy approach amazing drugs have been implemented into the care of CF patients. Venture philanthropy is when a nonprofit organization provides funding to a for-profit company to de-risk an investment. It was an entirely new approach to funding research. This was a monumental shift because most disease nonprofits had traditionally focused their fundraising dollars on academic and medical research. It was considered an unconventional strategy and a major gamble with no guarantees. They have made great strides in getting new and improved medication's to those who have CF!
Cystic fibrosis is a progressive, serious, genetic disease that affects the lungs, pancreas, and other organs.
There are close to 40,000 children and adults living with cystic fibrosis in the United States (and an estimated 105,000 people have been diagnosed with CF across 94 countries), and CF can affect people of every racial and ethnic group.
In Mackenzie's case she has double Delta F508 which affects her lungs and pancreas. Her pancreatic duct is completely blocked with the thick, sticky mucus and takes Zenpep with every meal to absorb the nutrients from her food. She takes an average of 24 pills a day. This includes Symdeko (CF corrector medication), vitamins and also daily nebulizer to help her maintain good lung health.
There are over 1,700 kinds of cystic fibrosis.
There is NO federal funding for cystic fibrosis research!
Mackenzie is a super healthy almost 13-year-old living with cystic fibrosis. For those of you who don't know her, she's a fiery redhead with a wild spirit!
Please consider joining us for the walk, and/or fundraising too!
https://fightcf.cff.org/site/TRR/GreatStrides/74_Massachusetts_RI?pg=tfind&fr_id=10470&fr_tjoin=
MANY companies match donations! Ask your employer to see!
THANK YOU for supporting TEAM MACKENZIE!
For more information on Cystic Fibrosis see www.cff.org
LOVE,
Doug, Suzanne, Dougie, Mackenzie & Lola
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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.