Volunteer

When I was diagnosed with breast cancer many new people entered my life seemingly within days: surgeons, oncologists, nurse navigators, and a bevy of technicians. I was impressed by the knowledge and compassion that was shown to me on every front. And, for the most part, each professional answered my questions thoroughly and accurately. Yet, despite their best intentions, I felt alone and very, very afraid of what the future might bring. My nights were long and often I lay awake for hours as my worries trumped even my exhaustion.

Then I accepted an invitation to have lunch with a 5-year survivor, arranged by a mutual friend. She told me her story, we discussed topics from chemo protocols to hair loss but--most importantly for me--there she was alive, well, and living a happy and productive life. Suddenly I was able to feel hopeful that my own life was not over and that I, too, could continue to thrive after my diagnosis.

It was at that point that I decided to "model" hope to others once I had recovered from treatment. Good medical care is essential of course but, for me, that one survivor's influence was so uniquely powerful.She helped me deal with my situation in a way that only someone who had been through the same experience could. And, at SHARE we have the chance to answer questions, provide support and show others that they too can move forward and hope for a return to good health once treatment is finished. When I was diagnosed with breast cancer many new people entered my life seemingly within days: surgeons, oncologists, nurse navigators, and a bevy of technicians. I was impressed by the knowledge and compassion that was shown to me on every front. And, for the most part, each professional answered my questions thoroughly and accurately. Yet, despite their best intentions, I felt alone and very, very afraid of what the future might bring. My nights were long and often I lay awake for hours as my worries trumped even my exhaustion.

Then I accepted an invitation to have lunch with a 5-year survivor, arranged by a mutual friend. She told me her story, we discussed topics from chemo protocols to hair loss but--most importantly for me--there she was alive, well, and living a happy and productive life. Suddenly I was able to feel hopeful that my own life was not over and that I, too, could continue to thrive after my diagnosis.

It was at that point that I decided to "model" hope to others once I had recovered from treatment. Good medical care is essential of course but, for me, that one survivor's influence was so uniquely powerful.She helped me deal with my situation in a way that only someone who had been through the same experience could. And, at SHARE we have the chance to answer questions, provide support and show others that they too can move forward and hope for a return to good health once treatment is finished.

The Department of Defense (DoD) distributes approximately $150M a year in congressionally directed breast cancer researching funding. In addition to the Breast Cancer Research Program, the DoD runs similar programs for a variety of diseases. The programs are designed to provide support of innovative, hegh-risk, high-reward studies. The distribution methodology for all of these programs provides for Consumer Advocates at all levels of the decision-making process, from establishing research priorities for the year, to reviewing each and every proposal, to the final funding decisions. As such, advocates sit on panels right alongside scientists, and have an opportunity to share their opinions, concerns and/or support about all of the projects under review. We are there to put a face on the disease and to bring survivor concerns to the forefront.

Consumer advocates (typically survivors themselves, although not necessarily) can apply directly to the DoD. In addition to your application, you must submit a recommendation from a “sponsoring” agency. Finally there is a brief interview that gives both the DoD and you a chance to address any questions you might have. If accepted, you will be assigned to the next available panel, along with administrative support, a scientific review officer and a consumer advocate mentor to help get you through!

While nothing more is required, if you do not have a medial or scientific background, understanding the proposals can be daunting. I personally suggest that applicants get some measure of background in the science side of breast cancer. The place I turned, and highly recommend, is the National Breast Cancer Coalition Project LEAD. You can find more here: http://www.breastcancerdeadline2020.org/learn/project-lead/


In addition to the inclusion of consumer voices, another hallmark of the DoD program is that all funded researchers are required to share their results at their Era of Hope Conference. It is a way to ensure that both promising results as well as “bad” results become a part of the knowledge pool.

While the DoD model has been implemented in may other grant settings, both domestically and world-wide, DoD remains the most highly sought and respected funders in breast cancer research. You can learn more about being a consumer reviewer for the DoD on their website: http://cdmrp.army.mil/cwg/default.shtml.
The Department of Defense (DoD) distributes approximately $150M a year in congressionally directed breast cancer researching funding. In addition to the Breast Cancer Research Program, the DoD runs similar programs for a variety of diseases. The programs are designed to provide support of innovative, hegh-risk, high-reward studies. The distribution methodology for all of these programs provides for Consumer Advocates at all levels of the decision-making process, from establishing research priorities for the year, to reviewing each and every proposal, to the final funding decisions. As such, advocates sit on panels right alongside scientists, and have an opportunity to share their opinions, concerns and/or support about all of the projects under review. We are there to put a face on the disease and to bring survivor concerns to the forefront.

Consumer advocates (typically survivors themselves, although not necessarily) can apply directly to the DoD. In addition to your application, you must submit a recommendation from a “sponsoring” agency. Finally there is a brief interview that gives both the DoD and you a chance to address any questions you might have. If accepted, you will be assigned to the next available panel, along with administrative support, a scientific review officer and a consumer advocate mentor to help get you through!

While nothing more is required, if you do not have a medial or scientific background, understanding the proposals can be daunting. I personally suggest that applicants get some measure of background in the science side of breast cancer. The place I turned, and highly recommend, is the National Breast Cancer Coalition Project LEAD. You can find more here: http://www.breastcancerdeadline2020.org/learn/project-lead/


In addition to the inclusion of consumer voices, another hallmark of the DoD program is that all funded researchers are required to share their results at their Era of Hope Conference. It is a way to ensure that both promising results as well as “bad” results become a part of the knowledge pool.

While the DoD model has been implemented in may other grant settings, both domestically and world-wide, DoD remains the most highly sought and respected funders in breast cancer research. You can learn more about being a consumer reviewer for the DoD on their website: http://cdmrp.army.mil/cwg/default.shtml.

That's great Sabine! My story is somewhat similar. I found it hard to find the right fit. I had some bad experiences with a large organization. Their loss.

When I lost my job I knew I wanted to get into non profit so I was looking to volunteer. I was extremely surprised that it was very hard to find volunteer opportunities. I really wanted to be at a breast cancer organization. I found an opportunity at the local chapter of the Leukemia & Lymphoma Society. It is a wonderful organization and I love volunteering there. I also got involved with the Metastatic Beast Cancer Network. That has recently led to a part time job. I couldn't be happier.

I'll add one thing to Sabine's advice, patience.
I just embarked on my Volunteer Career (I like that, it rhymes!) most recently. I was part of a clinical study at Sloan Kettering and I realized I was the beneficiary of someone's donation dollars. Then, I began to take part in a survivorship program and realized I was the beneficiary of someone else's skill and expertise because of their kindness in volunteering their time. I realized I needed to give back. I began poking around the hospital website to see how I might volunteer my time. And a new path began.

Local hospitals are great places to start. Nursing homes, too. (I have a hairdresser friend who volunteers her services a few hours a week). Googling for non-profits in your area and contacting them is another good avenue to find organizations that may be looking for volunteers. If you have a school aged child (or teen), the schools are likely aware of plenty of local organizations looking for volunteers.

There is no feeling better for me, than to know I made a small difference in the life of another, even if it was only for a short period of time. I stand in awe of some of the volunteers I have met at the hospital. Their commitment inspires me.

In the future, I would love to get more involved in educating young and underprivileged women who are either newly diagnosed with breast cancer or who have found out that they are high risk and have the BRCA gene mutation, but I'm not sure what that involvement might look like.

My initial goal right now is to finish writing my book (I am sweating through the third draft) and to start a Not For Profit to help cancer survivors volunteer oversees.

As part of this work, I would like the chance to volunteer again myself and work with women experiencing breast cancer in third world countries.

After I have these two ventures off the ground, I would love to have the opportunity to speak to groups of young women and educate them about screening and awareness. Particularly close to my heart would be to form some sort of support system for BRCA gene mutation carriers as I know how challenging it is to live with the risks and the fear of both breast and ovarian cancer.

If you have any ideas about how I can get more involved, please let me know. I would love to connect further! In the future, I would love to get more involved in educating young and underprivileged women who are either newly diagnosed with breast cancer or who have found out that they are high risk and have the BRCA gene mutation, but I'm not sure what that involvement might look like.

My initial goal right now is to finish writing my book (I am sweating through the third draft) and to start a Not For Profit to help cancer survivors volunteer oversees.

As part of this work, I would like the chance to volunteer again myself and work with women experiencing breast cancer in third world countries.

After I have these two ventures off the ground, I would love to have the opportunity to speak to groups of young women and educate them about screening and awareness. Particularly close to my heart would be to form some sort of support system for BRCA gene mutation carriers as I know how challenging it is to live with the risks and the fear of both breast and ovarian cancer.

If you have any ideas about how I can get more involved, please let me know. I would love to connect further!