Guest guest Posted February 12, 2004 Report Share Posted February 12, 2004 Welcome back Lenora!! Because of your email, I resent the email about Cystic Fibrosis Awareness Month in May to all my friends and family here in North Carolina and other states to write to their Senators!! Thank you for the encouragement and reminder. You are an angel. Crystal (mother of 2.5) > 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@e... > 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@v... * > 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@v... 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@v... > > Quote Link to comment Share on other sites More sharing options...
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