These are a few of the projects that Linda Creed Advocates are involved in.
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Legislative Alert |
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The Energy and Commerce Committee mark up the Breast Cancer and Environmental Research Act took place this Tuesday.
We are aware of the challenge of creating legislation and we recognize the efforts that so many have put forth in an effort to pass a meaningful bill. The negotiations that are such a vital part of our legislative process frequently result in many changes in the original bill. The original bill, the bill we have all been working on for nine years, has evolved and while the latest version of the bill to emerge from negotiations does not meet the basic goals, it is potentially a small step forward to attempt change at the National Institutes of Health. Linda Creed, as a member of the National Breast Cancer Coalition, will work as hard as we can within the structure the Breast Cancer and Environmental Research Act legislates to create the model described in the original version of the bill. We will work with our supporters and within the scientific community to achieve the initial goals.
The bill that emerged from the committee is on the House schedule for today.
To read an official statement from NBCC about this bill
CLICK HERE
The House yesterday also passed a CR (continuing resolution) which contained several funding bills. One of them is the Department of Defense Breast Cancer Research
Program appropriation in the amount of $150,000,000. That bill is on the way to the Senate.
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Important Stuff:
places to go, people to see and other ways to make a difference
A fun-filled day for everyone
Sign up your workplace & remember to tell them where you heard about it.
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Save the Date
May 2 - May 5, 2009
National Breast Cancer Coalition Fund's
Advocacy Training Conference
Please, join us in Washington
It is a life altering experience.
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Many thanks to all of you that responded to the alert sent out last week. Some congressional offices reported receiving numerous faxes, phone calls, and emails about the need to include the Breast Cancer and Environmental Research Bill on the agenda for today's markup. We asked and you delivered again. Thank you.
Please! Read our Legislative Alert for the results of today's hearing.
Last month, we presented the Linda Creed ACE award to two congressmen that have provided exceptional support for important breast cancer legislation. Both Rep. Tim Murphy (R-18) and Rep. Mike Doyle (D-14) have gone above and beyond in their efforts to make a difference and we were pleased to be able to recognize them with this award.
Our featured advocate this month is Susan Axler. Her article is one of the most profound articles we have ever published. We definitely made the right choice.
Finally, Linda Creed advocates are involved in a number of exciting projects. We want you to share that excitement.
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FEATURED ADVOCATE
Susan Axler has been involved with Linda Creed for many years. She is an energetic, extremely bright woman with an amazing capacity to give of herself. Her upbeat, let me do whatever I can do to make a difference, personality is even more amazing when you learn she has been living with Metastatic Breast Cancer for a number of years. We asked her to tell you about what living with metastatic breast cancer is like, and she surpassed our expectations. Susan is a wonderfully wise and generous woman - she has made an impact on many lives. It is easy to see why...
Advanced Metastatic Breast Cancer: Different? Oh My, Yes. |
How do you feel when the cancer that you thought you had beaten by marching and wearing pink comes roaring back? How do you deal with the looks of your husband, your children, your friends? The "you can beat this" self help memoirs lining the Barnes and Noble shelves? What do you say to the doubting Thomases you know? Did you do this, did you try that? My cousin went "here," her sister -in -law ate "that."
Breast cancer does not follow the straight and narrow path we long for. There is no arrow showing us the way to the future, that we are indeed in control. Breast cancer, I now understand, is not one type, one size fits all. There can, in fact, be a gene that sits and chuckles as we live our life, as we get on our early diagnosis soap box, as we race and talk and support other brave survivor warriors.
I know now what so many others do, that breast cancer is not always "cured." We do not celebrate, with champagne and balloons, that exalted five year mark. Too many of us have gone on for 2, 5, 15, over 20 years cancer free, only to be jolted back to reality with the solemn words, "Your breast cancer has returned and it is not just in the breast, I am sorry to say."
How do you react? What do you do? Does life go on?
I am living proof that you do react (you scream, write, sulk). You do cry. You definitely worry. You cannot read that one book, that Bible, that spells out for you what will happen next.
Miraculously, though, everyone of us, each and every person hearing those words and seeing those scans of cancer metastatic sites, has the chance to say thank you to dedicated scientists and to amazingly dedicated fundraisers, and to be around far longer than you ever thought you could. Things are moving--surely far too slowly-- but they are progressing. Grants are continually being written to help science better understand how breast cancer starts and why (or how) it comes back and spreads.
Along the way, you grieve those new-found cancer friends who show you so very much. Their courage, their humor, their advocacy that inspires is not, however, enough. Some have died after a few years, some longer, and some (although too few) have indeed lived "with" our disease for many, many beautiful years.
You find the strength inside you to cope with the unknown You work or you retire. Your read and you write. You spend time with those who are important to you and you try (not always successfully) to put away those toxic souls and unnecessary intrusions in your life that you know are so unimportant in the scheme of things.
You understand that what happens to you is not always in your own hands, but that you can get second opinions, you can google new drugs and treatments, you can make sure you get the best medications to soothe the chemotherapy days. You can join a support group, you can lobby with national organizations, you can take a walk on a beautiful spring day.
We are all different, but we are also so very much alike. You will find if you wander this yellow brick metastatic road, that what you think and what you say and what you do does indeed make a difference to yourself and to others.
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| Thank you again for all that you do. Always remember,
one person can make a difference...be that one person
until next time..... |
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