It’s that time of year again! We’re walking to raise funds and awareness at the Cystic Fibrosis Foundation Great Strides event!
This is our fourth year participating in Great Strides! Here are our totals for the previous three years:
The past two years, we had held our own additional fundraiser, Darts for CF, that helped raise our totals, but we aren’t able to do so this spring. So our only fundraising efforts through the Great Strides event!
We hope to raise at least $1000 this year, so I’m reaching out to everyone!
When I was diagnosed with Cystic Fibrosis during Christmas 1972, just a month after my first birthday, my parents knew virtually nothing about the disease. Everything we learned was through trial and error. Although the Cystic Fibrosis clinic I attended provided medications and education on living with CF, there was so much unknown.
Fast forward to 2016. I am 44 years old and there have been Great Strides made (pun intended) in research and development of treatments and therapies that aim to slow down the progression of the disease. You may have read about Orkambi, the first drug of its kind, designed to treat the root defect in CF. Although it did not help me, it is helping others. It also has paved the way for numerous new discoveries coming down the pipeline.
Life with Cystic Fibrosis
However, most of us *will* die from CF, and not from “old age”.
Life, for most CF patients, surrounds around medical care – hours of medications and treatments a day, frequent doctor visits and tests – because CF effects more than just the lungs, and weeks of hospital or home IV antibiotic care to help treat the deadly infections that live in our lungs.
And that is despite doing “everything right”.
Thankfully, the research and new discoveries have helped increase both the length and the quality of living. As of this writing, half of CF patients are over the age of 18, which is pretty amazing considering most of our parents were told we’d never reach most of the typical milestones in life – graduating high school, going to college, working, getting married, or even, for some, having children.
However, while it’s great that so many of us reach adulthood, we’re always living with a countdown ticking away, everywhere in our bodies.
Growing older also brings new problems:
- Organs that have been working overtime for decades are slowing down. Many of us will need a lung, liver or kidney transplant.
- Long-term use of medications and treatments deemed safe and effective on a short term basis may become less effective, and even start to damage other organs.
- Having CF doesn’t preclude us from regular “getting older” problems. In fact, we may be more susceptible to acquiring new conditions because of CF.
How you can help:
Once again, we are raising funds for the Cystic Fibrosis Foundation’s annual fundraiser – Great Strides, which is held in over 600 location sites across the country.
Please help us reach my fundraising goal by donating to my Great Strides 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 donate, please also ask your company if they do “matching gifts” – which would essentially double the money you bring to the cause!
Please also consider purchasing a “Toni’s Titans” t-shirt to raise awareness!
About Cystic Fibrosis
30,000 Americans have CF – CF is the #1 genetic killer in this country. CF destroys the length and quality of life in its victims – the median life expectancy is in the early 40s.
There is no cure.
DID YOU KNOW THAT…
- 1 in every 29 Caucasians carry the CF gene?
- 1 in every 46 Hispanic/Latino Americans carry the CF gene?
- 1 in 65 African American/Black Americans carry the CF gene?
*If YOU carry the mutation for CF, and have a child with ANOTHER carrier, that child, and each subsequent child, has a 25% chance of having CF.
What does the future hold?
That depends on people like you! Every discovery and new treatment is discovered thanks to the generosity of people like you and corporations who donate money and time.
There are so many new treatments being researched and medical trials planned, but we need to keep up our momentum to help keep funding these breakthroughs.
So please – open your heart, your wallet, your email program, your calendar, and do whatever you can to help.
Thank you for your time!