To my friends and loved ones everywhere:
As 2015 draws to a close, I would like to give thanks for Dorothy Ansine Andersen – the chain-smoking lesbian pathologist who, in 1935, performed an autopsy on a baby at Columbia Presbyterian Medical Center in New York, identified a previously unobserved medical condition, and invented a term to describe it: Cystic Fibrosis.
Dr. Andersen – a Vermonter by virtue of having graduated from St. Johnsbury Academy – was just the first in a long line of remarkable doctors and scientists who have thrown themselves into the task of understanding, treating and ultimately even curing CF. There was Paul di Sant’Agnese, who figured out that CF can be diagnosed by testing a patient’s sweat; Leroy Matthews, who in the 1960s developed the comprehensive treatment regime still in use today; Warren Warwick, inventor of the physical therapy machine now in widespread use; and Francis Collins, who (before he took his present job as head of the National Institutes of Health) led the team that discovered the CF gene.
Thanks to these people, and many others like them, a baby born today with CF isn’t an autopsy candidate – she’s a child with every prospect of living a long and fruitful life and ultimately dying of something other than CF.
But the work Dr. Andersen started still remains unfinished – a fact of which I am viscerally aware.
As I write, my daughter Rose – a cystic fibrosis patient -- is in the hospital. Sure, it’s kind of routine; like most CF patients, every once in a while Rose needs an intensive course of IV antibiotics in an effort to fight off the opportunistic bacteria that take up housekeeping in her lungs. But if you’re a parent who has ever had a kid in the hospital, you know that something like this is never really routine. It is a compelling reminder that the life of every CF patient is fragile.
Rose is having a terrific Eighth Grade year. She’s pulling down excellent grades at Richmond Middle School, she’s riding high on her horse most afternoons, and she’s busy looking at some cool secondary schools for next fall.
The Cystic Fibrosis Foundation (CFF) – the relentless and creative charitable organization that oversees both the treatment and research of CF here in the U.S. – is also having a great year. In late 2014, the CFF received a payment of $3.3 billion – yup, I said billion – for the sale of royalty rights for miracle CF drugs developed with the CFF’s financial support. That’s a pretty concrete tribute to the CFF’s strategy of partnering with drug companies to develop therapies for this so-called “orphan disease.”
I must confess, though, that as someone who has regulatory donated money to the CFF and asked others to do so as well, that $3.3 billion gave me pause. Why would such a well-endowed charitable organization need anything further from us?
The answer is really straightforward: because the work is nowhere near done. Those miracle drugs don’t help Rose; she has the wrong mutations. If the CFF stopped raising money, but kept going with all of its important research and other activities, the money would run out in 15 years. That’s not enough time to finish the quest Dorothy Andersen started 70 years ago.
So, this letter will serve as my annual invitation, during the traditional “giving” season, to join me in donating money to the Cystic Fibrosis Foundation.
I’m not exactly a hard-core fundraiser. I know that everyone’s resources are limited and that many good causes plead for help this time of year. But I also know that since Rose was born in 2001, a lot of people who care about her have taken some pleasure in connecting with her, and in helping her, in this fashion. If you are one of these people, you can make a donation in her name by going here.
We are a fortunate family; Rose gets the best CF care there is. But, since one in 25 people carries the CF gene, cystic fibrosis touches many folks. When you help Rose, you’re helping them too. So – thank you for considering my opportunity and best wishes for health, peace and happiness in 2016.
P.S. If you encounter a problem with a link, please visit my 2015 Partners in Progress Home Page at https://tools.cff.org/Partners/DonaldKreisANF15! NOTE: If link looks broken, cut and paste ENTIRE link into address bar. If you are presented with a "Find A Fund-raiser" page, enter my first and last name and click on "Submit". Then click "View Fund-raiser" by my name in the results list to go to "My 2015 Partners in Progress Home Page."