Lets draft a letter to Washington

beacher4209

im in ! read every post on this thread i will mail my pink envelope on the 23rd or do you want it to arive on the 23rd? i cannot promise how long mail travels...

FireKracker

I signed the petition AND I will send a letter in a pink envelope...IM IN!!!!!

painterly

I recruited two b.c.survivors and they will send 10 letters each..

Merilee

Awesome!

DivineMrsM

Merilee, thanks for the link to the petition.  I've signed it.  I don't know anything about NBCC (National Breast Cancer Coalition).  I am hoping it is a reputable organization. I just clicked on one of their links " The following organizations have officially endorsed Breast Cancer Deadline 2020^®"  

and it says "Page not found".  Does bc.org endorse them?  Is it because of NBCC that we are going to petition our state reps?  Please forgive me if this has already been addressed.  

I plan to put the petition link on my Facebook page after the first of the year and I know a good many friends and family will sign it.  That's why I'd like to hear a bit more about NBCC before I do.

Merilee

http://www.breastcancerdeadline2020.org/2020/assets/pdfs/2011-progress-report.pdf

Here is a link to their progress report for this year. It is a 78 page document that outlines what they have been up to. Impressive.

Frecklestoo

  I signed the petition, and I will send my letter in a pink envelope. I do wish we could get more survivors involved in this. We are a strong group of ladies and our numbers could be impressive. I know we all want to push the research that is showing promise of a cure. Lets all get together on this and make it happen. If we don't have the power then who else does? Whatever your letter says, it will make a mark on Washington if it arrives with a barage of other letters. Let's get this going.

Merilee

I agree, I have submitted one template to the mods for review, waiting for their feed back. I will work on another one as well. I will also  post a note that can be easily  forwarded to email lists ans such about the letter writing very soon. Also waiting to see what the Mods want to do to help spread the word. They may have something that we can all use if we want. So, there is work going on for this, just in process right now. I will keep posting as things progress. In the mean time think about who else you can get to send a letter. family, friends, create a facebook event, get creative!

carol57

I'll be asking the exec director of my local Komen chapter, and our local Gilda's club if they can include this idea in an email blast.  It's worth asking, and I will do now so there's a little heads-up time.

Merilee

Great Carol thank you. Ask her to send it on as well

CharB22

I haven't read through all of the posts here so I apologize if this has already been mentioned, but I'd like to see more funding for TN research. Chemo is my only option and there is nothing I can take for an extended period of time - like hormone suppressors - keep the beast at bay.

dense

Let's ask for more money for breastcancer.org to be able to do more epidemiological research.

There is a wealth of data in breastcancer.org and in the spirit of "ask not what your country can do for you, but what you can do for your country", I am wondering if we can use all that data better to help ourselves and our famillies.  Thousands of women join breastcancer.org every year.  That's much more than many studies.  There is a wealth of data on treatments that are recommended, side effects that were and were not suffered, usefulness of screening, etc.

For example, there is an ongoing debate about screening for low risk women under 50.  It seems to me it would be useful to know how many women under 50 on this board were diagnosed with an invasive cancer during routine mammography screening, and for how many cancer was not found this way due to breast density.  If we had statistics, even if not totally scientific, it would still be helpful, since our numbers are very large.

Often I feel that when reading the posts, I am not getting a true picture of what to expect.  By "not true", I do not mean that people are not being truthful, but I mean that it seems to be skewed.  Of course, I am still finding it helpful -- and that is why I am here, but I think it could be more helpful.

For example, I was very afraid of taking tamoxifen based on all the stories I read here.  I have been taking it now for two months, and tolerating it well so far (don't know of course if that would continue, or if it is doing anything for me anyway).  But what I mean is that reading gave me a lot of anxiety.  I think it would have been useful to get a more statistically accurate picture of the likelihood of different side effects.  

As another example, I wondered whether or not I should do a BCT or a mastectomy.  My doctors were supporting either decision.  I opted for a BMX, and precancerous cells were found in my "healthy" breast.  I think the statistics on how often that happens could be useful for other women weighing BCT or UMX vs BMX.

Many people are thinking about how to improve the healthcare system in this country.  Information technology and access to information can play a huge role in these  improvements.  There was a recent article in the WSJ about patients with rare diseases getting together on Internet and conducting their own clinical studies.  There are websites for example "PatientLikeMe" that allow people to connect with people with a similar diagnosis. Maybe with more money for programming the site, expanding and maintainig the database, and analyzing data we could make breastcancer.org even more useful -- adopting best ideas from other websites. 

Maybe we could ask members to fill out surveys every 2-3 months to collect data on treatments, diagnosis, symptoms, etc. -- as new hypothesis are generated and tested.  Not everyone would be willing to participate, and that's OK.  I think our numbers are still very large, and our findings would be useful.  That would be a concrete step that we can do ourselves to help ourselves.

momof3boys

Dense: I agree with you 100%!

FireKracker

Dense-sounds like something you should bring to the mods.I do agree with you also 100%.

FLislander

What I have noticed since I have been diagnosed is the amount of women under 40 years old in the chemo room with me, since mamograms are not done until 40, this does not make sense. Also now I  have read that the women under 40 category do not corelate to having close relative with cancer..... I think my next job will be an advocate to push this issue into public attention. I just did not know  Alot has been done to bring bc into public attention, but I got kicked in the ass. Lots to learn out there

Medigal

IMO, the main success of groups like this whether it be for bc or another disease is that people can discuss info with others who are actually "living" the same disease.  Books can give certain info but it may be out-dated by the time the doctors study them.  If I want to know how Arimidex affects someone, I want to be able to go to someone who is actually taking it etc.  Without the people who take part in groups like this, they would be basically useless.  So my thanks go to all who participate in the group and are there for us when we need our questions answered.  My Onc can't tell be how it feels to take Arimidex but many ladies in this group sure can!  Yet I am told to stay away from these type groups......good thing I learned to make up my own mine years ago!

Merilee

Medigal-Since I know you have written to Washington previously, would you please post the address at which mail is sent to the white house? Thanks.

Medigal

Merilee and Ladies:  The address of the White House is:

The White House

1600 Pennsylvania Avenue, NW

Washington, DC 20500

You can, of course, write "President Barack Obama" 

If you prefere to send an email as they recommend, and I usually do,  you can access:

www.whitehouse.gov/contact 

It gives an on-line form to fill out and send him a message.

If you also want to contact your senators and reps my favorite way of finding them is:

www.senate.gov

It gives you the names of all senators and reps for all states and you can select yours from the list and highlight it and go directly to their webpage and email form.  I use this a lot when I want to write to others not in my district but who will read my email during an election year.  (They need our votes!)

If you want to write to your individual senator about this campaign, you can call his local phone number and get the best address to send snail mail to.  

Glad to see we are going to be on time with this campaign, Merilee.  Will be watching for further info from you or any templates you may have for us to see.  Thanks!

Medigal

Merilee:  May I make a suggestion since 1/23/12 is getting closer?  Have you checked on which Senators are actually heading and involved with Healthcare etc. committees?  I have a list I regularly write to who are "my" senators and reps but if it is about a particular "cause" I research who is the Committee Head of that particular cause and also send my concern to them.   Those websites I gave also will give you what Bills are being worked on and who is on the committee.  Maybe you could request one of the other ladies who are involved to get this information for you and then share it with the rest of us.  From past posts earlier on here, I know we have certain ladies who probably already know where this info is available and can direct others to the names "if" you think my suggestion is worthwhile.

Oh!  Remember our other group which has their campaign going before this, maybe they can share some names of certain senators and heads of committees they contacted which can make our job a bit easier.   Will just let these people know bc.org is not giving up their dedication on their campaign for whatever our "cause" ends up being.

At this point, since we are just a week away from "countdown" time, I do hope you will let us know exactly what you hope the campaign to be about and where you intend the letters to be sent if you want it to be an organized campaign.   

For your info you might want to read what is already going on before we take off:

http://olpa.od.nih.gov/legislation/110/publiclaws/Breast_Cancer_and_the_Environment.asp

Merilee

I am putting the NBCC goals on here for consideration. There clearly is not going to be a consensus about what should be sent to Washington, so we all need to decide for ourselves. The important thing is that we all send them on the same day using pink envelopes or at least some pink on the envelope.

Medigal- thank you for adding the info about where to send things. I know that the white house prefers e-mails and I would encourage anyone to send one on the same day. But I doubt that it would have the impact that 10,000+ pink letters being put through the DC post office and delivered the same day would have. I would say do both. Thanks again for posting the info.

I have posted templates on my blog as the moderators here had some concern about posting them here. I will ask the mods if it is ok for me to put my blog address on here but in the mean time if you want to look at my templates you can PM me and I will send you the link.

Today, I contacted the following groups to ask them to join our mailing. Breast cancer coalition, Susan g. Komen, and Breast cancer alliance. I also created an event on my facebook page and would encourage you to to the same.This afternoon I will draft a letter about the event and will send it to my email address book.  Now is the time to spread the word. Let's go get em girls!

NBCC's Primary Goals

To achieve its mission, the National Breast Cancer
Coalition is guided by three primary goals:

• Research: to promote research into the cause of,

and optimal preventive and treatment interventions for, breast cancer through
increased federal funding, fostering of innovation and collaborative approaches,
and improved accountability.

• Access: to improve access to quality breast cancer

care for all women, from screening through diagnosis, treatment and care,
particularly for the underserved and uninsured, through legislation and change
in systems of delivery of health care.

• Influence: to educate and empower women and men as

advocates, increasing the involvement and influence of those living with breast
cancer and other breast cancer activists wherever and whenever breast cancer
decisions are made.

Medigal

Merilee:  How do we access your blog?  I do not participate in Facebook so I hope there is another way to get to it.  A lot of what you have written in NBCC'S Primary Goals is already addressed in the "olpa.od" Bill on the webpage I gave.  Never hurts to be redundant when it comes to achieving a goal, tho.  BTW, do we have 10,000 members ready to participate?  Just wondering since things have been quiet in this thread.

carol57

Merilee, Think about posting a new topic with a title such as Call To Action: January 23 Letters to Washington. Will you participate?  And then recap what you have here in recent posts, with the link to your blog so everyone can see the suggested templates.  Be specific in what you want everyone to do, because many will not have followed this thread.  And ask the mods if they can make it a 'sticky' post for a week or so.  Thank you again for your leadership in starting this letter writing campaign; I'm 'in' and I hope 9,999 others are, too.

Carol

llharper2

I'd love to join you all & would like to see some templates since I haven't read this entire thread.  I was just dx Thursday.  I had a mammogram Sept 23 & a follow up on Oct 18 but I wasn't told I needed a biopsy until Dec 7.  I had a biopsy on Dec 14.  I was informed on Dec 20 that the findings were bengin.  But on January 12 I was told the second path report indicated tubular carcinoma in my left breast.  Still waiting to have my right breast biopsied.  My husband is active duty military so I have great insurance.  Obviously patient care is seriously lacking.  There's no excuse for the delay in getting my results!!!!!!  Something needs to change.  This is unacceptable!

DivineMrsM

carol57, your post is just what I was going to suggest to Merilee.  It will even be helpful to those of us who do follow this thread.

FireKracker

As of right now there has been 2,893 views of this thread.Just wondering if they would be sending letters and why this board is so quiet????????????

Medigal

grannydukes:  NO board is QUIET when you are around!!   I was wondering the same thing.  Maybe all the action is on Merilee's blog and I have no idea how to access it.  I wonder why the Mods don't want to let the templates be on here since it is for a bc cause.  Well, Merilee said she would return this afternoon so where I am it is almost 4 pm.  I do hope she gives us the blog thingee.

FireKracker

Ya think i make noise huh.well here is some more...for all the sistas who read,look and are waiting please step right up and say something damn it....we need each and every one of you to bring people and more people....This thing could be huge!!!!!!!

BTW i started asking people on all the threads that i go on to please come here.one group was not happy i jumped in on them I guess i overstepped my bounds...

Yeah i can make a lot of noise but does anyone listen???????

Medigal

Granny:  What is more important than "does anyone listen" is that YOU are doing your part.  You know I am kidding you about your "noise".  If I ever had to go into a battle, "you'd" be my first one I would want to fight beside me.  At least you care enough to do your part.  I know what I plan on doing so now it is up to Merilee to give the info we need so we can prepare properly.

Best to you for caring, Granny!!

FireKracker

thank you Medigal....I just dont get it.....And yes I do care....for ever one of us....along with our children and grandchildren....

Frecklestoo

Carol 57, I agree with you, a new topic title might get some interest going. I can't understand why any one of the survivors on BC.Org wouldn't want to participate in something proactive like this. We should not sit back and accept our fate, we need to fight. Thank you gals for all the info as to where to send our letters and emails. This is a great help.