Lara's Idea - Awareness

[Guest guest]

Lara Borowski wrote about writing to your CF team and local chapter.

This is a very good idea.

Also, I think Lara mentioned getting a basic letter to use as a template.

Here is one I just modified from the CFF's letter to the editor

during last year's awareness week. Feel free to alter any way you

like.

Lenora

Dear Senator _______________,

On behalf of the tens of thousands of Americans with cystic fibrosis

(CF), including many in the enter state or county here area, I would

like to take this opportunity to tell you about a life-threatening,

genetic disease called Cystic Fibrosis. Some children say " sixty

five roses " to help them learn to pronounce this difficult-to-say

condition that robs its victims of their lives. It makes it cuter to

say, but it is not cute to live with. I am writing to ask for your

co-sponsorship of U.S. Senate resolution S298 declaring May, 2004 as

National Cystic Fibrosis Awareness Month.

In 1998, a teenager named April in Florida asked an email

support group, " Why don't we have a day or week for CF like they do

for cancer, AIDS, etc.? A group of individuals with CF and families

affected by CF gathered together and formed the National Cystic

Fibrosis Awareness Committee (NCFAC) headquartered in Colorado

Springs and set out to establish an awareness observance and produce

materials to inform and educate the public about CF all year long.

As a parent of a young child with CF and President of the NCFAC

(obiviously you would insert your relationship to CF here), I am

keenly aware of the importance of raising the profile of CF in the

minds of all Americans because I believe that, together, we can make

a difference.

A defective gene causes the body to produce abnormally thick, sticky

mucus within the lungs and digestive system. Children and adults

with CF often experience frequent, life-threatening lung infections

and have severe difficulty gaining weight and growing properly. Of

particular note is that 10 million Americans are unknowing,

symptomless carriers of the defective CF gene. When two carriers

conceive a child, there is a one in four chance that their child will

have CF.

In the past 20 or so years, the life expectancy of individuals with

this disease has increased from about five years of age to the early

30s today. While this is progress, it is not good enough.

Prompt, aggressive treatment of the symptoms of CF can extend the

lives of those who have this disease and recent advances in CF

research have produced promising leads in gene, protein, and drug

therapies - any one of these therapies could have a profound impact

on the health of those living with CF.

While we hope for and work toward a cure or treatment that makes CF

manageable, we are also concerned with the quality of life of

individuals with CF today. We are hopeful that during awareness month

we can not only educate people about early detection of CF and

interest them in donating to fund research, but also that we can open

their minds to differences in people and perhaps make the public more

compassionate and less likely to discriminate against people with a

genetic disease like CF.

If you would be so kind as to co-sponsor the resolution - or at least

support if you are not inclined to sign on as a co-sponsor - it would

be greatly appreciated by families like mine.

Sincerely,

--

http://www.lenoradegen.com

award winning design at small town prices

http://www.cfawareness.org

.....in memory...in hope...dispelling the darkness...

Learn more about Cystic Fibrosis and the special people who cope with

it every day

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