Tuesday, November 25, 2008

Major CF Misinformation

Hey all,

I came across This Article from Carleton University in Canada. Apparently, they dropped fundraising for CF because, "It primarily affects men and exclusively white people". The inaccuracies of this statement are so amazing, that I am flabbergasted it would come from anyone, let alone those going to University. I wrote a letter to the student newspaper, and I encourage all of you to do the same. Below is a copy of my letter.

To The Student Board of Carleton University,

I am writing about your recent decision to drop fundraising efforts for the Canadian Cystic Fibrosis Foundation. The facts used to make this decision are so off base, the action taken is deplorable. The presentation summary alone was full of misinformation and a such a lack of factual basis, it is shocking to me that it comes from a University organization. "And Whereas Cystic fibrosis has been recently revealed to only affect white people, and primarily men." Cystic Fibrosis is an inherited condition that affects men and women equally. The cystic fibrosis gene is carried on the 7th chromosome. It takes two bad copies of the gene to cause CF. Anyone with a basic understanding of biology would know that this has nothing to do with sex. How the writer of this proposition got this idea is beyond me.

It is true that CF primarily affects those of Western European descent, but this is not always the case. I could point you at the Stenzel Twins, who are 50% Japanese. I could point you at Milan, an African American girl living with CF. You could even visit the American branch of the Cystic Fibrosis Foundation and find the entire site translated into Spanish to address the ever growing population of Hispanics with Cystic Fibrosis. Straight from http://www.cff.org the website for the Cystic Fibrosis Foundation it states, "The disease is most common in Caucasians, but it can affect all races.". To further provide researched statistical data, I have provided a breakdown of races and their chances of having the CF gene.
Chances of Being a Carrier
European Caucasian, Ashkenazi Jewish 1 in 29
Hispanic American 1 in 46
African American 1 in 65
Asian American 1 in 90

Changing a fundraiser to a different charity is something that unfortunately happens from time to time. However, doing so based on information that is so far from factual is absurd. It would almost be funny if it were not so hurtful to so many, from those that have Cystic Fibrosis, to those that care about someone to CF, to people who value making decisions based on fact.

You may be curious as to why a person from Oregon, who has never heard of Carleton University is writing. You may have guessed that I have Cystic Fibrosis, and you would be right. This letter is not out of anger that you decided to drop funding for life lengthening and someday life saving research, but the lack of facts used to make this decision. Being University students, you would think that you would value finding correct information. If any of you were to write a paper using the facts presented about CF, you would be failed in a heartbeat. Voting with such fanciful information is completely deplorable, and if I were at your university, I'd be asking for the removal of board members who believed it was okay to vote without any factual basis.

Lastly, CF research does not just impact CF patients alone. Because we are such a large group for a genetic illness, cutting edge genetic research is often started in the CF population. Research that could one day also cure Parkinson's, Multiple Sclerosis, and a number of other devastating genetic illnesses. The world is a community. Saying that one group is unimportant because they are not large, is a very shortsighted and dangerous point of view.

Talana Fairfax
Eugene, OR


Alicia said...

My husband and I are very glad that you brought this to our attn. We're outraged and will definitely write letters as well. Thank you.

Froggymama said...

Wonderful points! I also heard about this ridiculous situation at Carleton. Never ceases to amaze me how stupid people can be. Hopefully, they've learned their lesson.