What's this all about?
This is about our daughter Meghan, who has cystic fibrosis. Meghan is a student at Canisius in Buffalo, well on her way to her long-held career dream of being an elementary special ed teacher. She's had a great time there, academically and socially, a sister in the Phi Sigma Sigma sorority, and has worked in the campus tutoring center since her freshman year. She's a counselor in our town's Parks and Rec summer program, focusing on special-needs children. You can find Meghan on Facebook pretty easily based on where she went to high school and college.
After being hospitalized for two weeks in 2008, she's been blessed with good health since, and has discussed her CF experiences to business and college groups, helping the Cystic Fibrosis Foundation to help her.
Here are some pictures of Meghan and her family.
Would any father ever forget a look like this?
What is cystic fibrosis?
Cystic Fibrosis (CF) is a genetically-inherited diseased in which the respiratory system produces abnormally thick and sticky mucus. This impairs the lung and digestive function, deteriorating both until death occurs. In 1992, we found out that Meghan had it.
Is there a cure?
No cure exists for CF.
What is the life expectancy for someone with CF?
This is a tough number to pin down. The most recent figure we have is 37 years. This means that half of all people with CF die before they reach that age. However, so many research breakthroughs have occurred since she was born, that this median life expectancy represents a significant advance - even over the past decade.
How do you get cystic fibrosis?
It's not contagious. You can only get it by inheriting a CF gene from your mother and your father. One in 28 caucasians, including both of Meghan's parents, unknowingly carries the CF gene. Carrying only one CF gene has no effect on one's health. If two carriers have a child, there is a 25% chance that the child will be "clean" (no CF genes), 50% chance that the child will be a carrier (one CF gene), and a 25% chance that the child will get two genes, and thus have the disease. In the case of our family, Meghan has CF, Emily is clean, and Michael is a carrier.
How does Meghan's CF affect her life?
It essentially doesn't. Her doctors say that she's the healthiest CF patient they've ever encountered. A typical CF patient is hospitalized once every two years or so for a "tuneup." This happened in 1992 with Meghan, but then not again until 2008 (see below). A typical CF patient takes five to ten prescription medicines several times a day. Meghan takes one vitamin and one antibiotic, once a day. However, in summer 2008, Meghan required hospitalization for the first time since 1992. A rigourous two-week stay, including antibiotic treatments and respiratory therapy, got her back into fighting shape. Although this should have no impact on her life, she began taking daily antibiotic treatments from a nebulizer to keep that setback in check. Every other aspect of her life is like that of any other girl her age.
So why do you care so much about raising money for CF research?
Because there is no cure for CF, and because her condition will NEVER improve with time, only worsen. Only a breakthrough brought on by expensive research will allow her to have as much chance as her friends and family at living a long life. Everyone dies, of course. But especially for a healthy and happy family, little could be sadder than a parent burying a child, yet that's what will happen to us if a cure is not found.
Why is this charity any more significant than any others?
It isn't necessarily more significant than any others, although it obviously is to our family. However, the charitable giving of most Americans consists of giving $10 here, $50 there to a phone or in-person solicitation, or in response to an advertisement. We're asking that those reading this make one of those donations to this sincere request, being made by and for someone you may know or have even met.
How can I help Meghan and others like her?
If your employer matches donations made to research organizations (many do), get a matching gift form as well.
You may also contribute using a check (made payable to the Cystic Fibrosis Foundation). If you don't have our address, email us and we'll send it to you.
We would like to thank all the donors who were kind enough to sponsor us in the past year!
How will the money be spent?
The money is spent on research for finding a cure for CF, and on means of care to improve the lives of those with CF. All local CFF accredited Care Centers (such as the University of Rochester for us) receive an annual grant from the Foundation to help them provide care to children and adults with CF. Much more information is available on the website of the Cystic Fibrosis Foundation.
Most charities waste my money. Why give to CF research?
The Cystic Fibrosis Foundation is perennially recognized as being one of the most efficient charities in existence. This link is one of many you can find, showing how the Foundation continually receives top ratings from independent auditors for its wise use of donor money. It's also noteworthy that in recent years, the Bill and Melinda Gates Foundation gave a significant grant to the Foundation, and another anonymous donor thought it worthy of a $25 million contribution. Your money, like theirs, will be spent wisely!
What does "spending wisely" mean? What kind of progress is being made to fight cystic fibrosis?
"Spending wisely" means, as described above, that well more than 90 cents from every dollar going to the Cystic Fibrosis Foundation winds up in the hands of researchers pursuing a cure for CF.
A quick web search for ["cystic fibrosis" breakthroughs] will give you interesting and current information on progress in CF research. Some examples of recent success are described in this Wall Street Journal article (39k pdf file) and these notes from a lecture by a CF researcher (8k pdf file).
Well, I'd really love to give, but the truth is, I'm broke. It's a really bad economy you know, and whatever little I could give wouldn't make much of a difference.
You're broke? You've got good company; so are we. But every contribution helps in a big way! Last year, as has been the case every year, we raised more than $1,000 from every segment of donors - those who gave $25 or less, those who gave $26-50, $51-100, or $101 and over.
Simply put, whether someone's contribution was $10 or $150, or higher, without it, we'd have likely missed our goal - AND fallen short of the amount we'd raised the year before. Every contribution matters!
Okay, I'm almost convinced. But if I give money to one charity, I'm on everyone's sucker list and I start getting solicitations from every organization in the world that has a hand out.
Great news! Any money sent to us (made payable to the Cystic Fibrosis Foundation) gets to the organization without your fingerprints. YOU get the tax deduction. YOU get the satisfaction of knowing you helped. But the CF Foundation will not record any information about you, nor will they directly or indirectly pass any information about you to any other organizations. (However, we maintain a donor list, and each donor hears from us in subsequent years).
What's in it for you?
You mean, other than the hope that our daughter might outlive us or her grandparents?
Okay, full disclosure here: The amount of money that we collect is enough that every year we walk away with a free consumer electronic product worth between $50 and $200 on the open market. And we will occasionally get a crack at free tickets to a sporting event or a show in Rochester, typically the day before the event when it's too late to get a baby sitter.
One more time: how can I help Meghan and others like her?
If your employer matches donations made to research organizations (many do), get a matching gift form as well.
You may also contribute using a check (made payable to the Cystic Fibrosis Foundation). If you don't have our address, email us and we'll send it to you.
We would like to thank all the donors who were kind enough to sponsor us in the past year!