YSC Takes Advocacy, Action and Awareness to Capitol Hill

A Message From the CEO:

This past Monday, I joined Rep. Debbie Wasserman Schultz (FL) in Washington D.C. to announce the Breast Cancer Education and Awareness Requires Learning Young (EARLY) Act. Inspired by Rep. Wasserman Schultz's own experience as a young survivor (she was diagnosed at 41) last year, this piece of legislation is the first of its kind focusing on awareness of breast cancer in women under 40. The EARLY Act calls for $9 million a year from 2010 to 2014 to launch a national education campaign for this often overlooked group of women.

We are pleased to see Rep. Wasserman Schultz bringing together policymakers and key stakeholders to begin discussing how we can better serve young women with breast cancer. According to

the Congresswoman's statement, The EARLY Act "seeks to educate young women on the risk factors for breast cancer, why certain populations are more likely to be at risk, and ways that young women can be proactive in lowering their risks. The legislation also seeks to help young women diagnosed with breast cancer deal with the issues unique to their fertility, and the social ramifications young women face."

This bill will enable funding and resources to teach both young women and medical professionals alike about risk factors, warning signs of breast cancer and predictive tools such as genetic testing that can help women make informed decisions about their health. Congresswoman Wasserman Schultz's brave revelation of her own experience has helped put a face to the unique issues and concerns we at Young Survival Coalition (YSC) encounter every day.

The EARLY Act will address these specific issues by:

• A national public awareness and education initiative targeting young women, especially those in at-risk populations;


• Health provider education to ensure health care professionals understand the risks facing young women and the specific concerns of young women who have been diagnosed with breast cancer; and


• Grant funding for support and assistance programs for young women diagnosed with breast cancer.

YSC has been working hand-in-hand with Rep. Wasserman Schultz on the content and wording of this important piece of legislation, which will soon be introduced into Congress with the help of

Rep. Sue Myrick (NC) in the House and Sen. Amy Klobuchar (MN) in the Senate. We are part of an active group of breast cancer organizations who support this bill and look forward to shaping its development.

As the legislation makes its way through our congressional system, you can be sure YSC will keep you informed on important issues and calls to action. Meanwhile, know that we are working for you-the thousands of young women living with this disease as well as the young women who are yet to be diagnosed.

For more information on the EARLY Act, please see the following or write to us at

info@youngsurvival.org:

Rep. Wasserman Schultz's EARLY Act Press Release
After Cancer, Lawmaker Urges Test, Washington Post, March 24, 2009
Rep. Wasserman Schulz on Good Morning America, March 23, 2009 (Story and video of appearance)
U.S. Rep. Debbie Wasserman Schultz Reveals Cancer Battle, Miami Herald, March 21, 2009

Sincerely,
Marcia Stein

CEO, Young Survival Coalition

YSC Announces Support for Rep. Wasserman Schultz's 'The Early Act'

Bill Calls for National Educational Campaign to Raise Awareness of Breast Cancer for Young Women Most at Risk
Young Survival Coalition (YSC) and Living Beyond Breast Cancer applaud Representative Debbie Wasserman Schultz (D-FL) for introducing legislation that highlights the breast cancer risks facing young women under the age of 40. The "Breast Cancer Education and Awareness Requires Learning Young Act of 2009," introduced today, calls for $9 million a year from 2010 to 2014 to launch an education campaign aimed at young women, especially those women most susceptible to breast cancer.
"We are pleased to see Rep. Wasserman Schultz bringing together policymakers and key stakeholders to begin putting ideas on the table to discuss how we can better serve young women with breast cancer," said Marcia Stein, CEO of YSC. "For a young woman, a diagnosis of breast cancer initiates a 40- to 50-year journey of living and coping with the disease."
"The legislation underscores the vital role of health care providers in educating young women about breast cancer," said Jean A. Sachs, MSS, MLSP, CEO of Living Beyond Breast Cancer. "Not only do women need to be empowered to take care of their own health, they also need their health care providers to recognize the possibility of breast cancer in young women and help them follow a prescribed health care plan for the rest of their lives that is tailored to their health history and needs."
According to the National Cancer Institute, breast cancer is the leading cause of death in young women ages 15-54. More than 250,000 women age 40 and under in the U.S. will be diagnosed with breast cancer at some point during their lives, and more than 11,000 women will be diagnosed in the next year.
Young women diagnosed with breast cancer struggle with many unique issues, including being more likely to be diagnosed with more advanced cancers, pregnancy concerns, dating and relationship issues, early menopause induced by cancer treatments, slightly higher mortality rates and living decades with this serious diagnosis. Because most psychosocial and medical resources are designed for women over 50, young women diagnosed with breast cancer often feel isolated and alone.
(more information will be forthcoming!!)

Guidebook just for Young Women with Breast Cancer!!

The 2nd edition of YSC ResourceLink Guidebook, published February 2009, is the premiere resource for young women and an incredible resource for all women affected by breast cancer, their family, friends, healthcare professionals and supporters.
This Guidebook is 172 pages filled with valuable resources for women at all stages of diagnosis, treatment, recovery and survivorship. It is the portal to numerous local, statewide and national assistance resources as well as more than 450 breast cancer support groups.
To access the Guidebook online, click on any of the chapter titles below to open a copy of each chapter that can be read with Acrobat Reader. If you do not have Acrobat Reader, download it here for free

ResourceLink Guidebook Table of Contents
Chapter 1: Welcome & Young Survival Coalition Resources
Chapter 2: General Resources
Chapter 3: Special Populations (African American Women, American Indian/Alaska Native Women, Asian American Women, Jewish Women and Latinas as well as Spanish Language Resources, Women with Disabilities, and Women Who Partner with Women)
Chapter 4: Genetics, Family History & Risk
Chapter 5: Detection / Diagnosis
Chapter 6: Treatment
Chapter 7: Financial, Insurance & Legal Resources
Chapter 8: End of Life
Chapter 9: Family, Friends and Caregivers
Chapter 10: Living with Advanced/Metastatic Breast Cancer
Chapter 11: Wellness and Moving Forward
Chapter 12: Support Groups

Point of Contact Program provides support

The YSC's Point of Contact Program, one facet of the YSC's ResourceLink peer support network, provides a young woman affected by breast cancer the opportunity to reach out to another young woman to discuss her breast cancer experience and find someone who can relate to her situation and understand her concerns.
The program is not just for the newly diagnosed but for all young women living with breast cancer. For example: a single woman preparing for a mastectomy; a Latina who would like to connect with others about cultural issues; a young, single woman living with metastatic disease; a young mother of two looking for advice on coping with fears of recurrence – anyl of them may call the YSC's ResourceLink Point o Contact program and be connected with someone with whom they can speak.
Any constituent who would like to speak with someone in the program may contact the YSC either by phone at 877.YSC.1011 or email. Once a discussion regarding interests and concerns takes place, the YSC will search the Point of Contact database to find the best possible match and provide the Point of Contact volunteer with information about the constituent. Within 48 hours, the Point of Contact volunteer will contact the constituent for an informal conversation over the phone or via email.
YSC's Point of Contact database currently includes women who represent a range of personal situations and diagnoses, including women who: are partnered with other women; have breastfed after treatment; are living with metastatic disease; are estrogen receptor +/- or HER-2+; have had a double mastectomy, or an oophorectomy; or were diagnosed in their early 20s.
Those interested in becoming Points of Contact are asked to attend a weekend-long training which will help them gain knowledge of the YSC, learn more about breast cancer in young women and network with other program volunteers.
We encourage anyone interested in the program to download the Point of Contact Volunteer Application (Microsoft Word document) or contact us directly at ResourceLink@youngsurvival.org or 877.YSC.1011.

Registration Opens To Survivors for the 2009 Hershey's TdP!!

October 1-5, 2009 ~ Join 175 fellow cyclists for the event of a lifetime!

Hershey's Tour de Pink is a 4-day cycling event comprised of 220 Miles of riding over 3 days and an optional ceremonial finish and celebration in NYC on day 4. You must be in Hershey on Oct. 1st for orientation and registration. Starting on Oct. 2nd, we ride through the beautiful countryside from Hershey to New Jersey on a scenic, rural route that includes two days of rolling hills and 6-8 hours of saddle time every day. Celebrities from the cycling world will be joining us again this year, so watch the website for updates. Each participant will be required to raise a minimum of $2,500. Thanks to a generous contribution from the Hershey Company, 100% of the money raised by participants goes directly to the Young Survival Coalition.

Survivor preregistration is now open. If you are interested in signing up during this preregistration period, please write to tourdepink@youngsurvival.org for sign-up instructions and the necessary password. Registration for the general public will be opening shortly and is expected to sell out quickly, so register today to guarantee your spot!

This is a survivor friendly event and beginners are welcome. Fundraising and training tips are available on the Hershey's Tour de Pink website, Facebook pages and an upcoming training info and mileage tracking website, where TdP alumni lend moral support, encouragement and help in the months leading up to the event.

Vote for the YSC!!

In a new partnership with Brooks For Her (BFH), the YSC will share a donation from Brooks with two other charities. However, in a twist from other partnerships, our supporters have a chance to vote how much of the share the YSC recieves!
For every article of BFH collection clothing sold between now and December 31, 2009, Brooks will donate 6.25% of the suggested retail price to the three charities!
To help YSC get a bigger piece of the pie....vote here, also between now and December 31, 2009!