RE: National Proclamation USA

[Guest guest]

Hi Lenora and Group:

I have a suggestion for the letters to be sent for C F Awareness MONTH in

the U.S. It would be helpful for you to have sample letters that could be

opened in a Word program and then personalized. Since we are unable to have

attachments for this list serve, you could make these available on your

www.cfawareness.org website.

Many of the people on this list serve, may not be familiar with the " cut and

paste " option. You can highlight and " copy " the information Lenora mailed

and then " paste " into a Word document such as Word for windows. You can make

your own changes from there. It is very easy to do and saves a lot of

typing!

Debbie

16 yo w/cf, 19 yo nocf

>From: lenora >Reply-To: cfparents >To: >Subject:

> Coming out of Hiding >Date: Wed, 11 Feb 2004 20:52:49 -0700 >

> >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 > > > > >This

>message has been scanned for viruses by the VEI Internet >Automatic Email

>Spam and Virus Scanner, and is believed to be free of spam or viruses.

> >Please report spam to spamtrap@.... If you would like 98.9 % spam

>blocked from your >E-mail then go to VEI Internet for details.

>Anti-spam/Anti-virus is FREE with every account. > > >http://www.vei.net/

> >mailtospamtrap@... > >[Non-text portions of this message have been

>removed] > >

_________________________________________________________________

Check out the great features of the new MSN 9 Dial-up, with the MSN Dial-up

Accelerator. http://click.atdmt.com/AVE/go/onm00200361ave/direct/01/