November 26, 2008

Cystic Fibrosis Facts

Talana, an adult CFer who lives in Oregon, blogged yesterday about an incident that happened at Carleton University in Ottawa, Ontario, on Monday. The school hosts an annual fundraising event called Shinerama for the Canadian Cystic Fibrosis Foundation (ccff), which started at the school 24 years ago. Evidently, the student body leadership decided next year they would like to raise funds for a different cause so ...

"In a meeting Monday night, CUSA members voted 17-2 to approve a motion to look at donating the frosh week fundraising money to other charities because 'cystic fibrosis has been recently revealed to only affect white people, and primarily men' and 'all orientees and volunteers should feel like their fundraising efforts will serve their diverse communities.'”

This information is wrong! I want to communicate the facts:
  1. Race: Cystic fibrosis is the most common life-limiting autosomal recessive disease among people of European heritage. In the United States, approximately 30,000 individuals have CF; most are diagnosed by six months of age. Canada has approximately 3,000 citizens with CF. Approximately 1 in 25 people of European descent and 1 in 22 people of Ashkenazi Jewish descent is a carrier of a cystic fibrosis mutation. Although CF is less common in these groups, approximately 1 in 46 Hispanics, 1 in 65 Africans and 1 in 90 Asians carry at least one abnormal CFTR gene.
  2. Gender: Cystic fibrosis is diagnosed in males and females equally. For unclear reasons, males tend to have a longer life expectancy than females.
Since Talana's post popped up in my google reader, I have read several newspaper articles and various other blog posts. Obviously, there has been an outcry from the CF community, and according to this article one of the board members will encourage an emergency meeting to "reconsider their decision" since "the information provided to the panel prior to the vote was factually incorrect". They will probably revote and still decide to switch charities, but at least it will be based on the truth.

And the question that keeps nagging at me: Since they have been fundraising for the CF foundation for so long, why did no one in the room catch how false these statements were?


Stephanie's Mommy Brain said...

I would say no one really knew what they were fundraising for.

Even if it were true. The idea of not doing fundraising to help fund a cure for a terrible disease because it only affects white males is ridiculous. Aren't there a couple of diseases out there that mostly affect black people or Jewish people? Does that mean only people in those communities should fund the research? Talk about political correctness taken to ridiculous extremes!!

Christy said...

At least it gets publicity.. it's like celebrities.. the most controversial news about them spreads the fastest. Now maybe people who have never heard of CF will at least know to do their research about it..