Angel Interview of the Month
Each month, The Angelrock Project features an Angel Interview of the Month, interviews with people who provide unique and life-saving services within large non-profit organizations. We hope that by reading their stories, you will understand their special contribution to society by working for invaluable NGO's within the organization's headquarters or in the field.
Q. What is triple negative breast cancer?
A. Triple negative is an aggressive subtype of breast cancer that disproportionately affects young women and women of African descent. It's fast growing and more likely to metastasize and recur than other forms of breast cancer. Triple negative breast cancer is more challenging to treat because it's unresponsive to hormonal therapies or drugs that inhibit HER2. That's why there is such an urgent need for more research in this area.
Q: How, why, and when did the Triple Negative Breast Cancer Foundation start?
A. Nancy Block-Zenna was the inspiration behind the Triple Negative Breast Cancer Foundation - an all volunteer organization founded in 2005. I met Nancy when our children were 6 months old at a music class for infants. We became instant friends. A few years later, Nancy was diagnosed with triple negative breast cancer. In an effort to help Nancy learn more about her diagnosis and treatment options, her close friends (myself included) decided to research the disease. We scoured the Internet but found very little substantive information about triple negative breast cancer. We were also alarmed by the lack of resources available to women diagnosed with this disease. It was then that we knew something had to be done. We just didn't know how to go about it. It wasn't until we had access to approximately $9000 in seed money that the idea of a foundation came into play.
Most of the money was raised by Nancy's friend Robyn Littman who jumped into action when she heard that insurance may not cover an experimental drug that Nancy was hoping to take. She had beach towels printed and sold them to raise money for Nancy. Soon, Nancy's other friends joined the effort. Eventually, we raised approximately $9,000. As it turned out, Nancy's insurance did cover the drug so the question was . . . what should we do with the money? Andrea Maline, a friend of Nancy's who is also a founder of the organization, came up with the answer: we should use the money to start a foundation to fund triple negative research. It made perfect sense.
Soon after, Allison Axenrod (also a founder) was looking for doctors to approach for advice on starting this foundation. She came across an article written by Dr. Eric Winer of Dana Farber saying that more research was desperately needed in this area. Allison wrote Dr. Winer an email describing our plans. He replied immediately. He said that this idea was long overdue and that he would help us. He suggested we contact doctors Lisa Carey and George Sledge, who were equally enthusiastic about the idea. All of us involved with the foundation are still amazed that we were able to recruit such an exceptional group of triple negative experts with such ease. Today, the three doctors comprise our Scientific Advisory Board. Dr. Winer is also a member of our Board of Trustees.
Finally, another one of the Foundation's founders, Sharon Fredman, brought our cause to the attention of Malaak Compton-Rock. Malaak was so touched by Nancy's story that she immediately offered up her home for our inaugural fundraiser. Even more importantly, Malaak offered us her guidance. Given Malaak's tremendous experience with non-profits and her dedication to our cause, she became an invaluable advisor to our new organization. Today, Malaak is a member of our Board of Trustees.
Armed with a team of dedicated volunteers, doctors and advisors, we were ready to begin our work.
Q: What is the mission of the organization?
A. Our mission is three-fold:
Q: Why is it important to have a breast cancer organization that is only focused on triple negative breast cancer?
A. People whose lives have been affected by triple negative breast cancer want and need an organization that is devoted to bringing focus and finding a cure specifically for this subtype of breast cancer. Historically, people have been incredibly generous in their support of various breast cancer charities. Unfortunately, only a small portion of donations to other breast cancer charities is used to fund research specifically targeting triple negative disease. Even though this disease effects up to 20% of breast cancer patients, it remains grossly under-funded. In contrast to other breast cancer charities, the TNBC Foundation's sole focus is triple negative disease. We are an all volunteer organization and we use 100% the money we raise to support the mission and goals of the Foundation. The more resources we devote to triple negative breast cancer, the sooner we'll find a cure.
Q. How come no one ever heard of triple negative breast cancer five years ago?
A. Only recently have we learned that breast cancer is not one form of cancer - it's a number of different cancers all originating in the breast. Today, doctors know that most breast cancers are characterized by the presence of three receptors (proteins found inside or on the surface of breast cells): estrogen, progesterone and HER2. We also know that none of these receptors is found in women with triple negative breast cancer. Most of the breast cancer treatments available today target these three receptors. Unfortunately, triple negative tumors do not respond to receptor targeted treatments so they are more difficult to treat. The more we know about this subtype of breast cancer, the more likely we are to find targeted treatments for this disease. That's what the TNBC Foundation is working to achieve.
Q. What are the organization's primary goals?
Q. Has the foundation begun to award research grants yet? What is this process like?
A. Yes, I'm proud to say that we're funding breakthrough research to support the discovery of promising new treatments for triple negative patients. This past December, the TNBC Foundation and Susan G. Komen for the Cure teamed up to co-fund a $7.5 million Promise Grant. This grant will fund a multi-faceted, multi-institutional, triple negative-specific research initiative which is likely to have real world clinical impact.
Financially supporting triple negative research has always been a primary goal for our organization, but we wanted to take our time to evaluate the various options available to us. When we heard about Komen's groundbreaking Promise Grant program, we knew it was exactly what we were looking for. These grants are designed to bring clinical researchers and basic scientists together to deliver new treatments for patients as quickly as possible. Also, the review process that was put into place to evaluate the proposals is so thorough that we knew that only the best proposals would rise to the top. We're incredibly excited about the project and its potential to save lives.
Q. What are the organization's major accomplishments thus far and how has the foundation grown?
A. First and foremost, we feel that we've helped to bring a lot of attention to this once little known subtype of breast cancer. When we founded our organization in 2005, it was partly because we were frustrated by the lack of information and support for women battling this disease. There was very little substantive information about triple negative breast cancer. That's no longer the case. Triple negative breast cancer has been generating quite a lot of media interest lately. A simple internet search today yields hundreds of news stories discussing the disease. This information serves to inform the medical community, to ignite interest among researchers and to give hope to patients battling this disease.
In terms of the TNBC Foundation's growth, we are now the primary source of information and support for women with triple negative disease. Our online triple negative community has grown to over 1700 registered members who share information and support one another on a daily basis. Our website offers comprehensive resources for anyone who wants to learn more about the disease - whether to assist in their own treatment or to help a loved one who is battling triple negative breast cancer.
We work hard to offer as much information and resources as possible. Last year we co-sponsored a number of educational teleconferences focused on triple negative breast cancer. This year, we've partnered with Living Beyond Breast Cancer to produce triple negative specific educational materials, as well as an additional teleconference for our constituents.
We've also been able to mobilize the medical community and to ignite a strong interest in triple negative research. We've spearheaded and co-funded two Triple Negative Breast Cancer Symposia. We will be convening our third symposium this coming December. The event is a full day "think tank" where over 30 doctors and researchers from leading cancer institutions worldwide focus solely on triple negative breast cancer and work together to identify the most promising avenues for future research initiatives. An authoritative report about the state of triple negative disease was derived from discussions at the first TNBC Symposium. It's been published in Clinical Cancer Research - Focus (a highly respected, peer-reviewed medical journal).
As I mentioned earlier, we've also begun to co-fund our first major research grant with Susan G. Komen for the Cure. It's a $7.5 million Triple Negative Promise Grant that aims to bring new treatment options to patients battling this disease.
Q. What should women ask their doctor if they are diagnosed with breast cancer to rule out triple negative disease or to confirm that they have this type of cancer?
A. Women diagnosed with breast cancer should ask their doctor to specify which subtype of breast cancer they are dealing with. They may want to ask if they are estrogen, progesterone and/or HER2 positive. Their particular diagnosis will dictate their treatment. Also, on the TNBC Foundation's website, we've assembled a comprehensive (and very useful) list of questions for women to take with them to their medical appointments. The more information they have, the better able they'll be to take charge of their own treatment.
Q. Tell us about the foundation's website and how it helps those suffering from the disease or their family members?
A. The TNBC Foundation's website (www.tnbcfoundation.org) is the primary online resource for women battling triple negative disease. We have over 1700 active members, not to mention the hundreds of additional visitors who frequent the site each day. The website offers valuable resources, including articles and a regularly updated list of clinical trials.
The most important feature of our website, however, is our talk forum. It's where women with triple negative breast cancer and their families and friends gather to share information and to support each other. I continue to be amazed by the sophisticated level of discussion on our boards. A number of our members are excellent researchers and are able to bring an extraordinary amount of substantive information to the discussions. No matter what stage of the disease you're in, you will find support on our website.
Q. What exactly do you do at The Triple Negative Breast Cancer Foundation?
A. I feel that my primary responsibility is to see to it that the organization remains true to its mission. Every new initiative, every project we take on has to further our ultimate goal: to find a cure for triple negative breast cancer.
That said, the TNBC Foundation is still an all volunteer organization and those of us who have been here from the start wear many hats. I do everything from fundraising to community outreach to stuffing gift bags!
I spend a lot of time working on our website - updating and adding content and resources to the site, as well as communicating with our online TNBC community.
Together with Allison Axenrod, our executive director, I plan and host our annual Triple Negative Breast Cancer Symposium. The two of us are also in regular contact with our Scientific Advisory Board (Drs. Eric Winer, Lisa Carey and George Sledge) and with the doctors and researchers who attend our symposia.
I'm particularly interested in the research aspect of our mission and so, for the past year, I was working closely with Komen in connection with the Foundation's co-funding of the Promise Grant.
Like all of our dedicated volunteers, I do whatever is necessary to get the job done. We're all here working together to better the lives of women suffering from triple negative breast cancer. Whatever it takes.
Q. What inspires your commitment to the organization?
A. At first, it was my friend Nancy who inspired me. Seeing first hand what this disease did to her was all the motivation I needed. When Nancy was diagnosed, there was so little out there in terms of information and support for women battling this aggressive cancer. Her questions and concerns were very different from those of women fighting other forms of breast cancer and yet, there was no place for her to turn. Now there is. We're committed to providing the women living with this disease a place to go for support and information that is relevant to their unique situation, I've developed a relationship with many of the women that the TNBC Foundation serves and they inspire me as well. Their strength in the face of this disease is remarkable. The trust and hope that they place in the TNBC Foundation motivates us to work hard for a cure.
Q. Do you get a different type of satisfaction working in the non-profit field than you did when you worked in the for-profit field?
A. Absolutely, especially since I was a corporate lawyer before this! I love knowing that my efforts have the potential to help so many people. I love that my life now has an added purpose. I also appreciate working in a cooperative environment where everyone - even those working at other breast cancer charities - are working towards the same goal.
Q. You are very involved in the organization's website actively emailing with patients who find support and information on the site? Why do you do this and how does it make you feel?
A. I spend a great deal of time communicating with members of our online TNBC community. It's one of the most rewarding parts of my job. Having constant contact with women battling triple negative disease not only motivates me to work harder, it gives more meaning to my work. I know exactly what type of information or services these women need because they tell me. This enables our organization to tailor our projects and initiatives to the needs of the women we serve. It also makes us better advocates.
Q. How can people reading this interview support the goals of the organization?
A. First, please visit our website (www.tnbcfoundation.org) to learn more about triple negative breast cancer. That way, you'll be in a better position to help yourself or someone you love in the event of a triple negative diagnosis. I know is scary, but knowledge is power.
Second, help us spread the word in your home community. Our website features dozens of inspiring examples of people who are working to raise awareness and funds for a cure.
There are so many ways to support our cause:
Q. Ten years down the road, what is your hope for the foundation?
A. Ten years down the road, I hope we have a proven targeted treatment for triple negative disease. I think that's a real possibility.
Q. How can children become involved with helping the organization?
A. I will never forget the day we received a package containing half a dozen hand-made cards from children encouraging us to continue to fight for a cure. They even drew our logo on the cards! It turns out that their grandmother was battling triple negative breast cancer. Those cards motivated me to work through the night.
Our website features shining examples of children who support us through various fundraising and awareness generating efforts - everything from the All-American lemonade stand to donating their change to making and selling friendship bracelets with proceeds benefiting the TNBC Foundation.
Q: What is your favorite book?
A. While I Was Gone by Sue Miller
Q. What is your favorite quote?
A. Let no one ever come to you without leaving better and happier ~ Mother Teresa
Q. What is your motto?
A. If you don't like something, change it ~ Maya Angelou
Q: Please leave us with a lasting thought about triple negative breast cancer or the foundation.
A. If I've learned anything these past few years, it's that every woman needs to be her own advocate. Arm yourself with knowledge. Know your body. If you feel that something is wrong, don't allow anyone to dismiss your concerns. Also, don't be afraid to ask for help. There is so much support out there if you know where to look.
For more information on The Triple Negative Breast Cancer Foundation, please click here. For questions or comments, please call 646-942-0242.
If you would like to make a financial contribution, please send a check made payable to The Triple Negative Breast Cancer Foundation and mail to:
The Triple Negative Breast Cancer Foundation
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