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

Thursday, November 6, 2008

Am I American Now..........

I've stayed away from politics here. I prefer to have a lot of give and take when I talk politics, and it couldn't possibly be good for me to just go off on my own. If you feel you need to leave my blog because of this... than that is your choice, although I question the wisdom of only reading material that agrees. I spend hours each week reading material that agrees with my views, and does not. Small shifts happen in my viewpoints because of this, and I am able to feel stronger in my convictions. This most likely will be the only time I touch on this subject.

That said, I'm ecstatic. In President-elect Obama I see a quality that I've not seen in politics that has overlapped with my life... but I see the potential in him that I see when I look at FDR, Lincoln, or JFK.

That said... I'm disgusted by things that people are saying about our President-Elect now that it is over. First off, many off them are filled with a vitriolic tone that should never come out of the mouth of someone that claims they are Christian... sadly most do. A Christian should accept what has happened, because as they always say "all in God's plan". What if this is God's plan... no one is able to say. It is this hatred, the spewing of biblical passages to slander, that helps turn people away from faith. I believe in God. But when I hear the bible used to hate, to slam, to judge anyone that disagrees with a select group of "Christians"... I wonder how many people they turned away, if I am disgusted. I pray for these people, that use their faith to wage harsh judgments. Who walk around with a sense of superiority. Jesus preached to the least among us. He did not judge... and as a Christian I am led to not judge others. So instead, I quietly pray for these people. That they will look at themselves and see if they are helping people find light, or find another reason to turn away.

There has been another question ringing in my ears since Tuesday night. The last 8 years have been filled with the slander "unpatriotic" the second anyone dared to question a Bush policy. "Your either with me or against me". If I was not happy about something happening in this country, my love of it was automatically questioned. Strange, when the foundations of this country were built by those seeking asylum from countries that ruled with such policies. However, many that threw these labels, are now the ones saying they will never be able to work with Obama. That no matter what, they will not be happy. I've read probably 100 blogs, ranging the spectrum from left to right, red to blue, in the last few days... and I never saw the question of patriotism of those that "refuse to work with Obama" questioned (I'm sure they exist, but out of my sample, I was unable to find one). The Mary Sunshine in me would love to believe that as a country we have moved past using such a misleading term, but I know that probably is not true. Because those that fervently pointed their fingers with their lips wrapped around the word "unpatriotic" are now wrapping their mouths around words of hate and discord. But, I would never call them unpatriotic. Just as it was my right, dare say, my responsibility to evaluate and question my leaders of the last 8 years, it is now their turn. But I hope that they are able to set aside their preconceived notions, and evaluate Obama by his on the job performance and not from their fear. I speak from a land of experience here. I was terrified when Bush was elected... but the most dire, most frightening predictions, never came true. Remember that when you read predictions. Did I agree with very little that the administration did in the last 8 years... yes. But I also tried to judge each step along the way. As the 8 years progressed, I did not lose a love for America, but I did not like our direction. It is possible to have both.

And a quick note to what I read in several blogs today. That they would not vote for a candidate who was not anti-abortion, and that is why they would never vote for Obama. That is fine, as that is their choice, but McCain also does not support the abolition of abortion. Yet, I only saw Obama's name mentioned. I wonder if they did enough research to know, or played ignorance. If you are going to be "pro-life" then by logical reasoning, you should support all diplomatic options before engaging in war that is very anti-life. You should support the health of your fellow citizen, as so many die in this country because of everything from lack of access to health care, improper diet, often spurred on by economic conditions, to countless others that choose between heat, food, or medicine. I don't know if full government funded health care is the answer, but we obviously have one that does not work. We are only as strong as our weakest links... and when a person can be denied insurance for a pre-existing condition, a disabled person has to wait 2 years before they get any insurance help from the federal government, and children who go years without seeing a doctor because a family cannot afford it with or without insurance... we have a lot of weak links.

And to those who wonder how people who voted for Obama could be so blind... I wondered the same about Bush. I gave him a chance, now it is your turn to do the same. It's all I ask of you... but if you don't... you are no less American.