Coming out of Hiding

[Guest guest]

Hey, Everyone,

I hope you are all well. I have been off all lists for awhile.

Graham's passing was really a blow to me. Then we lost a local girl,

Krysta, a month before her 18th birthday.

I have not bounced back easily. Just too close to home, I guess...

I fear what I may have missed, although I cannot believe the recent

wonderful news of le's and Isa's new lungs!

Anyway, I return with the mission to enlist all the help we can get

to declare May as C F Awareness MONTH in the U.S.

Below is the latest awareness newsletter.

Take good care, all.

Lenora

NATIONAL CYSTIC FIBROSIS AWARENESS COMMITTEE

N E W S L E T T E R

JANUARY * 2004

AWARENESS UPDATE

Several changes have occurred in the awareness effort. This is an

attempt to briefly fill in the committee members. As always, you can

contact Lenora Degen (chairperson) at any time to get more

information. Discussions are also welcome on the web site:

www.cfawareness.org

Awareness Week has historically been in October in keeping with

Australia's CF Awareness Week. This year, Australia has officially

moved its week to May, mainly because of the large presence of Breast

Cancer Awareness month in October. Canada also celebrates CF

Awareness in May. In an effort to support the international Cystic

Fibrosis community, it seems in our best interest to follow the lead

of other countries and join in honoring CF awareness in May as well.

We would like to make this the first Cystic Fibrosis Awareness MONTH,

rather than week this year, and we have some support in the Senate

that may make this happen for us.

Here is what we need to do:

1. The senate resolution MUST be co-sponsored by a respectable number

of U.S. state senators - preferably 50 or more, but more likely at

least in the 20's. Your 2 state senators in Washington DC are

important. In order for them to get behind co-sponsoring the

awareness month, they must hear from constituents and get some idea

why the awareness observance is important. Without personal stories

from their voters, they are not likely to care enough to co-sponsor

the resolution. If you want to see this come to fruition, you must

start now by drafting a letter explaining your relationship to CF and

why increased awareness is important (to fund research, to help

insurance-wise, to increase awareness about organ donation, to lessen

discrimination in the workplace, school, etc.) to you. THESE LETTERS,

EMAILS, PHONE CALLS NEED TO BE MADE SHORTLY AFTER THE RESOLUTION IS

INTRODUCED - WHICH SHOULD BE FEBRUARY. BEST BET IS TO WRITE NOW AND

HOLD THE LETTER/EMAIL TIL YOU HEAR FROM US AGAIN. THEN SEND.

2. IMMEDIATELY: Letters to the White House requesting a

Presidential Proclamation of Cystic Fibrosis Awareness Month will be

presented in early February. This is similar to the letter above, but

it is for the president and is independent of the resolution.

Personal letters are absolutely necessary for this to happen, so,

again, if you care about the proclamation being issued, you MUST

write. This has to be a real (snail mail) letter, because they are

presented in person to the White House by the senator. If you

represent an organization (CFF, CFRI, etc.) please write on your

letterhead. If you have time to include a photo, it couldn't hurt!

So, please write to Mr. Bush and send the letter(s) to me: NCFAC,

1612 N. Foote Ave., Colorado Springs, CO 80909.

Letters will be forwarded to Washington.

If you do not feel strongly about the proclamation from the

president, you do not have to participate in step #2. But to have the

month declared in the U.S. by the Senate, step #1 needs to be done.

Here is a rough draft of the resolution.

Expressing the sense of the Senate that the President should

designate the month of May as 'National Cystic Fibrosis Awareness

Month'.

Whereas cystic fibrosis, characterized by digestive disorders and

chronic lung infections, is a fatal lung disease;

Whereas cystic fibrosis is one of the most common fatal genetic

diseases in the United States and one for which there is no known

cure;

Whereas more than 10,000,000 Americans are unknowing carriers of the

cystic fibrosis gene;

Whereas 1 out of every 3,500 babies born in the United States is born

with cystic fibrosis;

Whereas newborn screening for cystic fibrosis has been implemented by

eleven states and facilitates early diagnosis and treatment which

improves health and longevity;

Whereas approximately 30,000 people in the United States, many of

whom are children, have cystic fibrosis;

Whereas the average life expectancy of an individual with cystic

fibrosis is in the early thirties, an improvement from a life

expectancy of 10 years in the 1960s but still unacceptably short;

Whereas prompt, aggressive treatment of the symptoms of cystic

fibrosis can extend the lives of those who have this disease;

Whereas recent advances in cystic fibrosis research have produced

promising leads in gene, protein, and drug therapies beneficial to

persons afflicted with the disease;

Whereas this innovative research is progressing faster and is being

conducted more aggressively than ever before, due in part to the

establishment of a model clinical trials network by the Cystic

Fibrosis Foundation; and

Whereas education of the public on cystic fibrosis, including the

symptoms of the disease, increases knowledge and understanding of

cystic fibrosis and promotes early diagnoses: Now, therefore, be it

RESOLVED,

SECTION 1. NATIONAL CYSTIC FIBROSIS AWARENESS.

(a) SENSE OF THE SENATE- It is the sense of the Senate that the

President should designate the month of May as 'National Cystic

Fibrosis Awareness Month'.

( PROCLAMATION- The Senate requests the President to issue a proclamation--

(1) designating the month of May as 'National Cystic Fibrosis

Awareness Month'; and

(2) calling on the people of the United States to promote awareness

of cystic fibrosis, and to actively participate in support of

research to control or cure cystic fibrosis, observe the month with

appropriate ceremonies and activities.

© ADDITIONAL ACTION- The Senate commits to increasing the quality

of life for individuals with cystic fibrosis by promoting public

knowledge and understanding in a manner that will result in earlier

diagnoses, encouraging increased resources for research, and

increasing levels of support for those with cystic fibrosis and their

families.

CFRI AUGUST CONFERENCE

MARK YOUR CALENDARS!

The 17th CFRI Annual Educational Conference

" One Day at a Time: Thriving with Cystic Fibrosis "

August 6-8, 2004 at the Sofitel Hotel, Redwood City, California

Cystic Fibrosis Research, Inc. of California has held an annual

conference for patients and families for several years. This year,

the group is adding a great art show which is open to individuals

interested in expressing themselves on the subject of:

" One Day at a Time: Thriving with Cystic Fibrosis "

Go here for an application:

www.thebreathingroom.org/st/st_mc01_artapp

or call or email Catharine et at:

cmartinet@...

The NCFAC is planning to hold its first board meeting during the

conference and hopes to have a table in the exhibition hall offering

info on our web site, our grassroots organization, awareness pins,

brochures and materials.

Regardless of your connection to Cystic Fibrosis, this event is

always a wonderfully organized, informative and supportive

experience. Scholarships are available. Please consider reading more

about the conference and art show at CFRI's website:

http://www.cfri.org or call Carroll , the director:

. Carroll has done so much for the spreading of awareness

about CF and about our awareness committee. We are thrilled to be

able to help CFRI get the word out about the conference.

Thank you all for your continued support! Lenora@... *

1612 N. Foote Ave, Co Springs, CO 80909

--

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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