Lets draft a letter to Washington

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  • Merilee
    Merilee Member Posts: 3,047
    edited December 2011

    Ducky1- Get on that soap box and yell loud and clear until this disease wiped out. We all need to do that- It is the only way we are going to make it happen. Don't apologize for what you say, it is the truth!

    Even if we only get 1/10 of the ladies from BCO to write a letter, that will be well over 10,000 letters. Impossible to ignore. Shout it out sisters! Shout it loud!

    Ask your friends an family to write a letter, or (send copies of yours) post it on your facebook, send it to your email list.

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  • FireKracker
    FireKracker Member Posts: 8,046
    edited December 2011

    Well sistas...my job is done....I got Ducky....i will be with her all the way.....and I told her if we can find a way to get to Washington I would come to her house and we would go together...Ya want a statement made we dont need the vodka to do it.

    Onward and upward....one step at a time....1 sista at a time....

    hugggggggs everyond K

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  • FireKracker
    FireKracker Member Posts: 8,046
    edited December 2011

    just wondering!!!!!! we had 1834 sistas viewing this thread and so far only 135 responses.

    Whats wrong with this picture????

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  • FireKracker
    FireKracker Member Posts: 8,046
    edited December 2011

    bump

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  • Medigal
    Medigal Member Posts: 1,412
    edited December 2011

    Sorry to be sticking my nose in where "certain" posters may not want  it but does anyone know if the Mods have returned with what the "templet" will  be?  I would like to get an idea of what it is so I can do my own if it isn't what I want to say. I still plan on participating one way or the other. Thanks!

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  • Merilee
    Merilee Member Posts: 3,047
    edited December 2011

    Hi Medigal

    Thanks for asking.

    I have not heard back from the mods and had a really hectic week myself so did not check back with them yet. As soon as I know anything I will post.

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  • Enjoyful
    Enjoyful Member Posts: 3,591
    edited December 2011

    Good to see you, Medipal!

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  • Medigal
    Medigal Member Posts: 1,412
    edited December 2011
    enjoyous:  Are you my old pal also known in previous lives as "enjoyful".?  If not you need to change your name.  I can only cope with "one" enjoy whatever in my life at the same time.  Oh!!  Did you get thrown off of the board and have to return with a new name??  Beloved, you need to make up a completely different name so we won't know it's you.  Those Mods don't make the big bucks for nothing.  I think they have to take a detective course to be a Mod.Wink  Glad you can still "see" me whoever you are. I am always delighted when you are around.  Have a great holiday or if you don't celebrate them like I don't just pretend you are me and sit around and cry a lot!  Did you hear my Onc is finally taking me off of the Arimidex after 8 and one half years?  Soon as I finish up the last batch I paid for, I am on my own fighting this crap!  Kind of scary.
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  • Merilee
    Merilee Member Posts: 3,047
    edited December 2011

    Medigal- 8 1/2 years wow, good work! Here's wishing you complete wellness from this point on.

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  • carol57
    carol57 Member Posts: 3,567
    edited December 2011

    Just a thought, but perhaps what counts most is the flood of letters, and it does not matter if there is a uniform message beyond: do something about BC, please!  If every woman who writes expresses her own opinion about how to attack what she perceives as the problem--some like the idea of universal healthcare, some do not; some like the idea of super-funding cancer research, some prefer to emphasize changes to disability rules--there will still be a wonderful chorus of voices heard. 

    I do agree that an effective letter proposes solutions, but there will never be a uniform view cultivated here, which is clear from all these passionate posts.  Does there really need to be a uniform view of what do do?  If we each tell our story of what's not working, followed by our personal vision of what might fix it, the messages will be diverse yet powerful and positive.

    And...why not mail each letter in a pink envelope?  A sea of pink in the mail would be an amazing visual, even if the letters travel over a few days instead of exactly the same days (given the number of days needed to physically travel from various locations in the country to Washington).  If there's no easily-found pink envelope, color a white one with pink marker and let it dry before addressing.

    Thank you to whoever in the thread volunteered to create a mailing list to make it easy for everyone to figure out to whom and where to send a letter.

    What a wonderful forum thread.  Keep it up, you wonderful activists!

    Carol

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  • DivineMrsM
    DivineMrsM Member Posts: 9,620
    edited December 2011

    I do like the idea of a pink envelope.

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  • Enjoyful
    Enjoyful Member Posts: 3,591
    edited December 2011

    Me too!

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  • Medigal
    Medigal Member Posts: 1,412
    edited December 2011

    carol:  What mailing list are you referring to?  Aren't we supposed to be sending these letters to our individual Senators, Reps, Obama etc. ?  We live in different districts so we don't all have the same people to mail or email the letters to.  If you want to know who is in your district, just go on the White House webpage and put in your state and info and it will give you a list of who you are supposed to write to.   If someone is emailing, they can use the special box on that Senator or rep's webpage to email them.  The only address that everyone should have which would be the same is if they write to Pres. Obama. 

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  • carol57
    carol57 Member Posts: 3,567
    edited December 2011

    Medigal,  I think on one of the earliest pages of this discussion thread, someone volunteered to create a list or perhaps link to one.  That's what I'm referring to.  You are certainly correct that the White House site provides this information.

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  • crazy4carrots
    crazy4carrots Member Posts: 5,324
    edited December 2011

    Sticking my nose in where it probably doesn't belong, but ---- I refer you to the following website:

    http://report.nih.gov/rcdc/categories/  

    This shows the amount of $$$ spent annually on breast cancer alone over the last several years.  The most recent stat is $778 million, and is broken out from cancer at $5,934 billion.

    All of this is to say that if you ask your President, Senator or Congressperson to provide more funding for breast cancer, you are likely to simply receive the above info (that is, if you actually receive a reply).

    There is a TREMENDOUS amount of money being spent, not just in the U.S., but worldwide, on breast cancer research.  I am not suggesting a letter writing campaign will not be effective, only that perhaps a request for universal and affordable access to immediate and continuing care and treatment might have more realistic longterm political results.

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  • Enjoyful
    Enjoyful Member Posts: 3,591
    edited December 2011

    Yes, Linda, but how much of those research funds are spent on curative therapies rather than treatments to prolong life?  I think we can all agree we'd rather have cures than therapies that gives us 6 more months of life. OR, research proving that we all really do have side effects from therapies.  OR, research proving that exercise helps QOL.  Any dollars spent on anything other than a cure is a waste, IMHO.

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  • VJSL8
    VJSL8 Member Posts: 652
    edited December 2011

    But cures can come from research accidents. Heceptin was orginally targeted as a treatment for a type of brain cancer but it didn't work. I doubt that any HER2+ women would consider it a waste of money. 

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  • Medigal
    Medigal Member Posts: 1,412
    edited December 2011

    Ladies:  I just found out that the White House now has a webpage for Petitions where people can sign and they need so many signatures for each petition.   Of course I want a CURE for cancer but unfortunately, I don't think our letters are going to achieve this.  However, if we put a petition on that White House webpage we can not only hopefully get "our" members to sign it but other Americans also.  This way, the President can see just how many Americans want this and the added affect of other outsiders joining us in our cause may help.  Just an idea for you to chew on and maybe help with our campaign.   My hope is for "Healthcare for All" and I tried to put my petition on the page but I may have messed it up since I can't find it.  (Maybe Obama erased it since he thinks his Affordable Act IS providing this.).  I just like the idea that our cause can be open to more than our own members in case we don't get the numbers we need to make the affect we want.

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  • crazy4carrots
    crazy4carrots Member Posts: 5,324
    edited December 2011

    There will be no cure(s) found until scientists uncover the causes of all the various breast cancers.  Until they have those answers (and that is where the vast bulk of the research dollars are going) then therapies to prolong life are what we're left with.  And as you personally know, research dollars are also going into the development of vaccines, based on the knowledge derived from determining the causes of BC.

    As for research into proving we all have SEs, or that exercise helps, or that more ILC is found in patients whose fathers had cancer (?!!), that isn't basic (lab bench) research, and each of those types of studies (mostly epidemiological meta analyses) receive a very small portion of funding. 

    VJSL8:  From my discussions with basic researchers over the years, "accidents" (some good, some not) happen frequently in the lab!  

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  • Merilee
    Merilee Member Posts: 3,047
    edited December 2011

    Just wanted to let everyone know that as suggested by one sister, I will wait till after Christmas to follow up on this. The Mods have agreed to help all though we have not worked out the details yet. I will also make a few templates  available for anyone who just wants to print and send. I still encourage anyone who wants to to write your own stories to do so. Any of you who would like to share these stories can send them to me in a PM and I with your permission I will put them on my blog Breast cancer-beating back the beast. If you would like the web address let me know and I will PM it to you. Yes to pink on the envelope to mark  the fact that they are all from survivors or friends and family of survivors.

    Here is wishing all of you a cancer free Christmas.

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  • Medigal
    Medigal Member Posts: 1,412
    edited December 2011

    Merilee:  Thanks for the update.  However, as I have posted before, I will be sending my letters via email so I guess the "pink" is not possible for me.  Email or snail mail, personally I think what is most important is that we use this particular same day to get the message sent.

    Healthy holidays to all!

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  • Moderators
    Moderators Member Posts: 25,912
    edited December 2011

    Just a FYI, the petitions at the White House site don't become searchable until they have 150 signatures within 30 days, then there's another threshold of 25,000 signatures needed within 30 days to join a queue to be reviewed by the White House.

    There's more info about the program here (click to go to the link)

    Judith and the Mods

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  • Medigal
    Medigal Member Posts: 1,412
    edited December 2011

    Mods:  Those are the Petitions I was referring to earlier on this thread.  However, I did not know we were sending these as "Petitions".  With the petitions, there is only "one" letter on there and everyone has to agree to what it says and sign it.  Unless this petition includes a need for "healthcare insurance for all", I have no intention of signing it.  I have already sent my letters to Obama, and my senators and reps and got no reply yet. 

    I know how the petition works but it's not the way I thought this campaign was to be handled.  I do hope we will be advised soon as to what the "group" wants to do since this is a group effort.  Are we still using 1/23/12 date for campaign??  If it is "one" petition, the ladies who wanted to go "pink" will not get to send their "pink" letters.  BTW, from what I understand, the Petitions on the White House site are for Obama.  I don't see anything on it that the Senators and Reps have any part in them or even read them.  I thought the original idea was to flood "all" of them with our emails or letters on a certain date. 

     I know what I intend on doing and it will take place on 1/23/12 (unless an emergency happens).  Best of luck to whatever the rest of you decide to do.

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  • carol57
    carol57 Member Posts: 3,567
    edited December 2011

    I'll be sending a pink-envelope letter to my senator, to my representative in the House, and to President Obama. The gist of my letters will be simply to ask all of the above to put aside their partisan differences for one very long pink moment, so they can put their collective heads together to find ways to both continue funding BC research and to make truly accessible health care available to every woman, through insurance or other mechanisms, to ensure she will receive a prompt diagnosis and state-of-the-art care that is within her financial reach.

    Merilee, thank you for initiating this letter-writing campaign.

    Carol

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  • Medigal
    Medigal Member Posts: 1,412
    edited December 2011

    Did anyone check out the White House Petitions recently?  The Heart Assn. wants them to make February a "Red" Day and focus on heart research.  Maybe we can ask for a "Pink" day for January but we need to get the petition in asap if we hope to get enough signatures for them to even post it now.  The Mod was right about the rules for the signatures so if we are going to go with the Petition, we might want to get things going, imo.  Frankly, I don't like the "Pink", "Red" or whatever color campaign but I say "majority rules" so whatever the majority wants to go with........... 

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  • chele
    chele Member Posts: 1,465
    edited December 2011

    I want to be able to get SSDI whithout quitting the job I' ve had for 11 years. The way it is now I have to quit and starve for six months until my first check arrives, then find a part time job. I need to cut back on my hours, but can't with the current system. Medicare should start the same day SSDI starts.

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  • Medigal
    Medigal Member Posts: 1,412
    edited December 2011

    chele:  You can't have it both ways, imo.  If you need SSDI that is supposed to mean you are too disabled to continue working the way you probably are.  I have written to Washington several letters about making SSDI people wait 2 years for Medicare!   That is as bright as their PCIP making you wait 6 months without insurance before you can purchase it through their program.  Evidentally, none of our reps in the big "W" have ever been ill or have had anyone in their family with a chronic disease!

    I would love to see our "letter writing campaign" say something about these problems.  However, I don't wait on others.  I have already done my own personal campaign and sure hope you get angry enough about this crap to send in some of your own letters.  Thanks!

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  • mikita5
    mikita5 Member Posts: 373
    edited December 2011

    Well, I'm just seeing this campaign for the first time...

    I see many posts, but nothing definite.. Has anything been decided on this subject? A date set?

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  • mikita5
    mikita5 Member Posts: 373
    edited December 2011

    Why not, ladies, send our original letter on Jan 23rd, as previously stated, then send this same letter each week? Surely they would get bogged down with that amount of bc mail coming every week and certainly would not look forward to it.?  Just a suggestion! 

    Count me in... If nothing is decided on here, I will send my individual letter to arrive on 01/23/12.

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  • Merilee
    Merilee Member Posts: 3,047
    edited December 2011

    The only thing that has been decided is  the date of Jan 23rd. There will be a template (or two) available for those who just want to point, click, print, sign  & mail. Many have voiced an interest in conveying their own personal struggles. There has been talk of pink envelopes, or pink on envelopes.

    Some ladies want to send something to the President and others want ot reach senators and  state reps. All of the above will have an impact because we will flood mailboxes and email on the same day to make a statement about being a critical  mass who can and will influence the next vote.

    The mods are willing to help get the word out but there is still some discussion that needs to happen about how.

    The petition mentioned earlier is on the Breast cancer Coalition web site. I will look up the link and post it again. I would encourage you to sign it as well as send your own communications on Jan 23rd.

    Editedto add: http://www.breastcancerdeadline2020.org/act/Presidential-Petition.html

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