Our Voices: A Blog by Links, Callers and Volunteers

Meet Our Athletes

Meet our incredible Team Sharsheret athletes who will be running the ING NYC Marathon on Sunday.  Click on each athlete’s name to read their stories and find out why they joined Team Sharsheret!

Jonathan Blinken
Sarah Feit
Steven Gottlieb
Daniella Kohlhagen
Ilana Milstein
Eve Merrill
Tammie Purow
Beri Schwitzer
Mark Segall
Renana Silverman
Alain Spira
Jamie Tadelis
Andrew Wigod

Update from the National Society of Genetic Counselors Conference

Cancer gene panels were a hot topic at the recent National Society of Genetic Counselors conference in Anaheim, California. The annual educational conference is a chance for genetic counselors to learn about the latest developments in the field, discuss these developments as they relate to genetic counseling, how they affect our patients, and how they are integrated into clinical practice

Sharsheret Site Visit and Launch of Financial Wellness Tool Kit

The Jewish Women’s Foundation of New York (JWFNY) visit to Sharsheret headquarters the other day just impressed us all.   We were there to learn about the latest and greatest idea coming out of this amazing organization, the Financial Wellness Took Kit, which is funded by the Jewish Women’s Foundation of New York. After the tour, after meeting the staff behind the scenes, after visiting their impressive wall of awards and the empty wall on reserve for future awards, we went into a conference room to talk about the details.

The Financial Wellness Tool Kit was borne out of a roundtable discussion about women taking control of their financial health during and after a health crisis.  As Sharsheret researched how to go about handling this for its community, it realized the following:  women want to know about how to handle their financial information right away, at the start of the diagnosis.  They need a place to keep it—staying organized is crucial to staying on top of this.  And lastly, they need all the information in one place—a one stop shop.

In the tool kit, you will find compartments for health insurance, disability insurance, financial planning, estate planning, and resources.  The truth is that this tool kit and its financial wellness planner could and, arguably, should be used by any and all of us as we age and need to plan for a future.

It is always inspirational to see Rochelle Shoretz and her devoted staff.  And as part of the Jewish Women’s Foundation of New York, we are doubly proud that we have helped fund this new and necessary tool kit.  But the truth is, Jewish women all over can be part of this—by telling friends, by getting educated on campuses, by using the tool kit.  Sharsheret once again meets a need for all Jewish women.  We thank you and know that this new year is better because of Sharsheret and the work they do.

Filming Our New Video Series: A Message From The Producer

Sharsheret’s new video series, “One Woman At A Time”, showcases the stories of ten inspiring women who have used Sharsheret’s programs.  I named the series “One Woman At A Time” to honor how Sharsheret values the women involved in the organization’s national programs and services.  While Sharsheret helps thousands of women, each woman feels special and receives the undivided attention of Sharsheret’s incredible staff.

Initially, I was concerned about finding ten women who would be willing to discuss their cancer journeys on camera.  Sharsheret staff members reached out to some of their peer supporters and, with their permission, connected me with women who wanted to learn more about the project.  When I explained what I needed and answered their questions, all ten women said, “I will do whatever Sharsheret needs.  I want to give back.”

During the filming, there were only three of us on set - the interviewee, the cameraperson, and me.  In this safe space, the conversations were emotional and very honest.  These remarkable women shared their experiences so others could understand how vital Sharsheret was to them and their families. “If it weren’t for Sharsheret…” became the shared theme.

My hope is that you will watch these films and appreciate all that Sharsheret offers “One Woman At A Time”.  Perhaps you will also be touched by the humanity shared, as I was, and who better to convey that essence than these ten wonderful, articulate, beautiful women.

Welcoming The New Year

This past year, I was diagnosed with early stage breast cancer. My team of doctors prescribed chemotherapy and a dizzying array of tests and surgeries. As of this writing, my last surgery occurred a little over four months ago. There are moments when I think about what I’ve just been through and am stunned by the intensity of this last year and the fact that I am still here.

Though being sick is terrifying and at many times, infantilizing, cancer is a profound teacher. I’ve learned a great deal this past year, especially, that in addition to having a physical immune system, I also have a spiritual one. My spiritual care evolved in many ways. My brother and cousin flew out here to be with me and one of our rabbinic interns came to my apartment to sound the shofar as I wasn’t able to attend the High Holiday services last year, acts of kindness which I will never, ever forget. Many amazing friends from my synagogue community and from other parts of my life reached out and helped me with meals and with taking me to treatment appointments and holding my hand during chemo. Sharsheret was a huge part of strengthening my spiritual immune system. From pairing me with a peer supporter, connecting me to their staff genetic counselor who patiently explained complicated issues relevant to my being a BRCA carrier, to sending me a pillow so that I could rest more comfortably after surgery, the people at Sharsheret understood what I was going through.

As I continue my journey of transitioning from being a cancer patient to being a cancer survivor, it has become more and more important for me to pay it forward and help the next person who is diagnosed with this disease to navigate the world of coping with a life threatening disease. May we all continue to go from strength to strength.

Sharsheret Receives Highest Rating From Charity Navigator

We are proud to announce that Sharsheret has received a 4-star rating from Charity Navigator for sound fiscal management and commitment to accountability and transparency. America's premier charity evaluator, Charity Navigator works to advance a more efficient and responsive philanthropic marketplace by evaluating 6,000 of America's largest charities.  

"Receiving four out of a possible four stars indicates that your organization adheres to good governance and other best practices . . . and consistently executes its mission in a fiscally responsible way," wrote Ken Berger, President and CEO, Charity Navigator. "Approximately a quarter of the charities we evaluate have received our highest rating, indicating that Sharsheret outperforms most other charities in America. This 'exceptional' designation from Charity Navigator differentiates Sharsheret from its peers and demonstrates to the public it is worthy of their trust."

Thanks to all of you, our supporters, whose dedication has played a vital role in Sharsheret's growth. Our Board of Directors and staff will continue to work diligently to ensure Sharsheret exceeds expectations and merits your continued trust and commitment.
 
Click here to renew your support today.


The Sephardi Question

We know that 1 in 40 Ashkenazi Jews carry a BRCA gene mutation that increases the risk of developing breast cancer by approximately 80% and ovarian cancer by approximately 40%. However, approximately 25% of the world Jewish population is not Ashkenazi, and begs the question: What does this statistic mean for the Sephardi population?

Recent studies on the subject seem to indicate that it means more than the scientific community originally thought. In the past decade, stories of young Hispanic women developing the kind of aggressive breast cancer associated with a BRCA gene mutation commonly found in Ashkenazi women popped up around the Southwestern United States. It turned out that these women were actually descendants of Sephardi Jews (defined in this instance as Jews with Spanish and Portuguese ancestry, but the term is often used more broadly to include Jews of Middle Eastern decent as well), who were exiled to the United States and Mexico during the Spanish Inquisition. This story led genetic counselors around the country and in Israel to begin seeking answers to the question: Are Sephardi Jews also at high risk of developing BRCA gene mutations?

There isn’t a concrete answer to this question yet.  There is a limited pool of Sephardi women sampled in scientific studies on BRCA gene mutations. However, a study on the genetics of different Jewish geographic groups conducted by Dr. Harry Ostrer, a professor of genetics at the Albert Einstein College of Medicine, has demonstrated that all Jews are likely genetically related.  Additionally, studies conducted in Israel have revealed two unique mutations in the BRCA genes that are found only in Sephardim, one of which was found in women who immigrated to Israel from Iraq, Yemen, Iran and Afghanistan, and the other was found in a study conducted by Dr. Michael Sagi on ‘pure’ Sephardi Jewish women from Spain and Portugal. Out of the 177 total women sampled in Dr. Sagi’s study, approximately 1 out of every 30 was found to have a mutation in the BRCA gene.

This emerging research suggests that Sephardi women may be at high risk of developing hereditary breast cancer and ovarian cancer, but more comprehensive research is needed. We will continue to follow this research and keep the Sharsheret community informed of any new developments. If you have questions regarding your personal family history or risk of hereditary cancer, click here to contact our genetic counselor Danielle Singer.

Supreme Court Gene Patent Decision: What It Means For You

Last week, the US Supreme Court ruled on a significant gene patenting case.  The issue before the Court was whether or not a company’s patents on the BRCA1 and BRCA2 genes could be upheld. The landmark ruling states that a gene is a naturally occurring product of nature, and therefore cannot be patented. The Supreme Court’s ruling has important implications for clinicians, cancer patients, and individuals who are at higher risk of a BRCA mutation than the average population either by personal or family history. Many say that the Court’s ruling will increase access to genetic testing by eliminating the monopoly on the test, which will thereby reduce the cost of testing significantly and allow for consumer choice.  For many years, the American College of Medical Genetics has asserted that gene patents “stand firmly in the way of good patient care, interfere with informed decision-making by patients, impede training of the next generation of lab professionals and restrict the flow of information that is critical to advancing medical knowledge and better medical care accessible to all.”  Therefore, some anticipate that this decision will better enable appropriate and more affordable testing, particularly for those who are uninsured or underinsured. 
 
Carrie Horton, MS, CGC
Director of Genetic Counseling
West Clinic
 
Brad Somer, MD
Medical Oncology
West Clinic

Supreme Court Rules on Gene Patents

This morning, the Supreme Court rendered its decision in the gene patenting case, holding that “genes and the information they encode are not patent eligible under §101 [of The Patent Act] simply because they have been isolated from the surrounding genetic material.”  The Court noted that Myriad Genetics, the laboratory that currently offers testing for the BRCA1 and BRCA2 mutations found in 1 in 40 Ashkenazi Jews, did not create or alter either the genetic information encoded in the BRCA1 and BCRA2 genes or the genetic structure of the DNA.  Though the Court noted that Myriad found an important and useful gene, it acknowledged that groundbreaking, innovative, or even brilliant discovery does not by itself satisfy the §101 inquiry and is therefore not subject to patent protection.

What does the Court’s decision mean for thousands of women and families at risk of breast or ovarian cancer or considering genetic counseling or testing? 

Call us at Sharsheret or chat live with our staff genetic counselor.  Thousands of women, men, and families reach out to us for support and information about cancer genetics.  We’ll walk you through your options, and connect you to others who have done the same.

Honoring Our Survivors On National Cancer Survivors Day

National Cancer Survivors Day is on Sunday! Survivors in Sharsheret’s National Peer Support Network have shared when they considered themselves survivors.  Read their inspiring words below and join us in honoring all of the incredible women of Sharsheret. We would love to hear from you – tell us when you considered yourself a survivor in the comments section below.  Click here to join our new survivorship program, Thriving Again, and order your free survivorship kit today!

“I can't pinpoint the exact time frame. But I do remember a shift in my outlook - rather than being one of the 70-80% who would experience recurrence within five years, why couldn't I be in the 20-30% who would not? After all, some of us had to be and I needed to be. It is now 3 years and 9 months post- treatment and I am optimistic about my future.” – Leslie, diagnosed with stage 3 ovarian cancer
 
“The day I found the lump.  I knew it was going to be cancer, but I also knew that I was going to fight and survive!” – Linda, diagnosed with stage 2 breast cancer

“I’m never going to be rid of cancer, but around 2 years after my diagnosis I started to feel like a survivor. I’ve always felt like a warrior.” - Diana, diagnosed with advanced breast cancer
 
“The doctor said, ‘You have ovarian cancer’. Then looking at my daughter’s distraught face he added, ‘We’re going to take care of her’.  That was the first time I considered myself a survivor. I felt a sense of relief that I could get on with it – life that is. Many sweet moments since have reinforced that feeling - getting married between chemo three and chemo four, dancing at my children’s weddings, the births of my delicious grandsons, and reading and listening to stories of hope from my ovarian cancer sisters.”
 - Sharon, diagnosed with advanced ovarian cancer