Hopefully, many of you know that we here at SurviveDAT, SurviveMISS and SurviveAL (the Gulf States Young Breast Cancer Survivor Network) are here to help.
But how many of you know there are a whole group of organizations which can help you?
The Centers for Disease Control and Prevention (CDC) is currently funding seven organizations (including us), all of which offer specific services to young breast cancer survivors like you. Take a look:
Facing Our Risk of Cancer Empowered (FORCE) advocates for families facing hereditary breast and ovarian cancer and provides educational information, resources, and support via online message boards, a toll-free helpline, chat rooms and more. You can also get information on research studies and clinical trials, while their XRAYS Program provides reliable breast cancer news and information, with a star rating system that tells you how good or bad the information is.
Living Beyond Breast Cancer (LBBC) offers specialized programs and services for the newly diagnosed, young women, women with advanced breast cancer, women at high risk for developing the disease, and African-American and Latina women. LBBC offers customized information tailored to where a woman is on her cancer journey. LBBC also connects women, loved ones and caregivers with trusted breast cancer information and a community of support. This spring on April 5 in Philadelphia, LBBC is hosting the 2019 Conference on Metastatic Breast Cancer: Thriving Together. Not local? Apply for an LBBC travel grant and/or fee waivers.
Young Survival Coalition (YSC) provides peer support and networking opportunities for young women diagnosed with breast cancer, as well as information for family, friends and providers via their website, social media, discussion boards, online support groups, and in-person meetups. YSC hosts one of the largest face-to-face meetups for young breast cancer survivors at their annual summit where women (and men) affected by breast cancer can meet other survivors, physicians, experts and organizations with resources.
In addition to the above organizations, which have a broad or national focus, there are organizations for some specialized groups and locales.
Sharsheret (pronounced shar-sheh-ret) is a national, not-for-profit organization that offers support and resources for young Jewish women and their families facing breast cancer. Among Ashkenazi Jewish people (men and women), one in 40 carry a BRCA mutation, which is 10 times the rate of the general population. That heavy cancer burden and need for education on breast cancer and ovarian cancer has led Sharsheret to focus on Jewish women and men and how their cancer journey relates to their faith, community, and culture. They also provide education to patients, family and physicians on how Judaisim relates to the patient’s diagnosis, treatment, outlook and overall wellbeing, via seminars, phone calls, webinars, social media and their website.
Dana-Farber Cancer Institute's Young and Strong Program for Young Women with Breast Cancer was founded in 2005 and is the first and only one of its kind in New England. They have guided more than 4,500 young women on their journeys through and beyond cancer, offering comprehensive care, support, and education tailored specifically for them. This multi-faceted program follows young women from diagnosis through to survivorship, with individualized care and support all along the journey.
In the Baltimore area, The Johns Hopkins Young Women with Breast Cancer Program is a specialty clinic for young women diagnosed with breast cancer, headquartered in the new Under Armour Breast Health Innovation. It provides an individual approach to treatment, via education materials, enhanced delivery of care for patients, individualized prescriptions for wellness, as well as implements research discoveries for young women with breast cancer to reduce overall breast cancer death rates. Patient Navigators meet with all patients to provide those tailored resources, as well as address specific needs, including care coordination and resources, along with psychosocial support, ranging from communication with employers and schools and ways to support children and caregivers, to helping with individual and family adjustments to cancer.
Watch our short video to see how we and our partners can help you.