You know that I'm a great fan (and luckily a friend) of Roland Merullo, the fine writer whose novels, essays, columns, and nonfiction books are endless delights and causes for profound thinking. As per below, Roland and Amanda have a personal need to cure cystic fibrosis, as their talented daughter, Alexandra, has CF. One of Roland's finest novels, A Little Love Story, is about a young man who falls in love with a young woman with CF. I had the chance to meet Alexandra and her sister, Juliana, just a few weeks ago, and was impressed with both girls' poise, warmth, friendliness, and sense of humor. Read on and I won't have to convince you further to make a contribution to the CF Foundation's annual walk: Checks made out to Cystic Fibrosis Foundation and mailed to Merullo, Box 111, Williamsburg MA 01096.
Every two years Amanda and I send this letter to all of you, asking for donations to help find a cure for cystic fibrosis. As most of you know, our older daughter, Alexandra, has CF.
She is 11 and staying very healthy, partly because she has been so diligent in keeping to her routine of therapy. Every night for the past eight years she has done at least half an hour of chest physical therapy—one of her parents drumming on her back and sides to loosen the mucus in her lungs. Recently she has switched to a pneumatic vest that shakes her pretty hard, but takes less time: fifteen minutes a day when she is healthy, twice that when she has a cold.
She has at least four annual visits to the CF clinic in Springfield, MA, blood tests, CT scans, throat cultures; a simple cold can turn into an infection requiring a month or more of antibiotics. The disease affects her in other, more minor ways: she can't be around anyone else who has CF, can't go in a hot tub or have a wood stove in the house; she suffers from occasional stomach and muscle pain and gets dehydrated very easily on hot days.
And she is one of the lucky ones. Many kids her age and younger have already been hospitalized several times with lung infections or digestive problems. Some don't grow normally, some have a three-times-a-day regimen of chest PT and inhalants, and have to take ten or twelve different medications. Those with the most severe mutations of the CF gene sometimes require a double lung transplant before they reach high school.
Tremendous steps toward a cure have been made just since our last letter, in 2007. There are new drugs going into human trials that promise, if not a comprehensive cure, then at least a significant extension of life expectancy—which is currently 37 years.
Even though the disease is rare (affecting only about 30,000 people in the US), which means that drug companies don't stand to make a huge profit from finding a cure, the Cystic Fibrosis Foundation has come up with ingenious ways of persuading them to do work that benefits cystic fibrosis patients. The Foundation has been cited by the Wall St. Journal for its efficiency: 90% of your donation goes to actually paying for medical research, only 10% to administrative costs.
On May 17th we will participate in the annual CF walk here in Northampton, MA. Each family or person who walks is part of a team, and each team collects donations that are passed on to the Foundation. We are the Alexandra and Juliana team. We do not like to ask our friends for money, and we know that many of you already have other important charities in your life, and that you have given generously to CF in the past—through our walks and in other ways. Some of you give through work, or just send in a check independently of the walk; one friend donated his car.
We also know that this isn't the best time in the country's economic history, and that for some of you any extra expenditure is difficult. But for the sake of our daughter and the tens of thousands of other individuals and families struggling with cystic fibrosis, we ask you to consider sending a check to help us find a cure. Two years ago, through your incredible generosity, we raised over $11,000.
If you are able to contribute, please know that any amount is welcome and appreciated. Checks should be made out to the Cystic Fibrosis Foundation and sent to us at:
Williamsburg MA 01096
If you can join us in the Northampton walk on May 17th, or the walk at Revere Beach on May 9th, we'd love to have you. When we hand over our envelope of donations we always tell the people at CFF not to put our contributors on a mailing list, and they have always respected our wishes.
With sincere thanks,
Roland, Amanda, Alexandra and Juliana Merullo