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2017 NBCC Annual Leadership Summit - Florida Advocates Go to Washington, D.C.!

June 20, 2017

Larry Mendlow, Jacksonville, FBCF Board Member — In 2011, my wife passed away from breast cancer. Since that time, I have been seeking ways to prevent other families from having to go through what mine did. As a result, I got involved with FBCF. I have found that oftentimes, being a male in the breast cancer world is a two-edged sword. In many ways, it prevents you from being a direct patient navigator/advocate, the preference being another woman. On the other hand, when a male Congressman/Senator meets you, there is greater impact as it helps personalize the meaning of the words you are giving—it helps him realize that breast cancer can affect him also.

“The Summit was extremely interesting and full of all sorts ideas and knowledge. Both the plenary sessions and workshops were full of exciting possible breakthroughs in breast cancer medicine, talks to help understand the current political landscape and methods to lobby effectively. The most exciting speaker on a medical note was Dr. Sohail Tavazuie; we should watch his work even if it is not being done in Florida.  The plenary session on health care reform was extremely interesting trying to put sense into both the problems with Affordable Care Act (ACA) and the potential difficulties in the House passed American Health Care Act (AHCA). We met with both Senators and 10 Congressmen, who all expressed their support and understanding of our issues.”

 

Lora McCann, Cape Coral, 2017 Jane Torres Scholarship Fund Recipient —  I am a survivor and breast cancer is my passion. I am an independent patient advocate with an interest in cancer both one on one with clients as well as nationally in policy.

 “My favorite part of the trip was Hill Day. I enjoy watching our government at work and appreciate having the opportunity to be listened to. Last year, the day after we visited Representative Wasserman-Schultz's office, she signed on to NBCC'S legislation. This year, I am hoping that we will have equal support. We also had the opportunity to meet Representative Frankel and Representative Rooney.  I believe if they see the issue as a person, not an idea, it can help.”

 

Alysia Pringle, St. Petersburg, 2017 Jane Torres Scholarship Fund Recipient — I am a five-year survivor and I’ve seen one too many women gain their pink wings. Like Larry Mendlow, I not only fight for other men and women to not fight this battle in the future, but I have two daughters that I fight for as well.

“My favorite part about Lobby Day was meeting Florida Representatives and or their assistants. My most memorable moment was meeting Congressman John Rutherford and listening to Larry’s story discussing the urgency of Congressman’s support on the two most important breast cancer issues. I want to express extreme gratitude to FBCF for approving me for the Jane Torres scholarship to be able to attend NBCC’s Summit and Lobby Day.  Thank you forever FBCF!”

 

Alexandria Washington, Tallahassee, 2017 Jane Torres Scholarship Fund Recipient — I am not a survivor; however, I have always been an advocate for the cause because I understand that I am not exempt from the possibly of one day being impacted by breast cancer whether it be myself or someone in my family. I strongly believe in prevention so I am ecstatic that there are organizations working to prevent and reduce people’s risk for breast cancer. 

“Besides the actual lobbying day and getting to meet different congress members from Florida I thoroughly enjoyed the sessions on using social media as a tool and the sessions preparing us for the actual lobbying day. Overall, I was impressed with the whole layout of the summit because they not only prepared you to lobby, but they also gave you the science behind what is currently being done that way you have some basis to present your argument to the congress members. I am just really thankful for the opportunity to attend and this was a summit that I wouldn't mind attending again.”

 

Judy Perkins, Port St. Lucie, 2017 Jane Torres Scholarship Fund Recipient — I am a survivor (although, when I had my metastatic breast cancer diagnosis, I didn’t think I was going to “survive”).  I became interested in breast cancer advocacy when I was diagnosed with metastatic breast cancer.  I continue to be interested because I was cured of an incurable disease.  Now, I want to give back and work on behalf of other breast cancer patients.

“The most memorable part was attending the Project LEAD® Workshop: Investigating the Etiology of Breast Cancer Metastasis through Genetic and Genomic Screens. Also, I was excited to hear about a new RGX-104 clinical trial presented by Sohail Tavazoie, MD, PhD, Head of the Laboratory of Systems Cancer Biology, Rockefeller University.

**Judy looks forward to continuing her work in breast cancer advocacy as she prepares to speak as a patient advocate on behalf of Inspire’s Advanced Breast Cancer Discussion Group on October 17th in Orlando. The working draft of the panel is: The Power of the Empowered Patient in the Era of Precision. We wish Judy the best of luck in October!

 

      
            Larry Mendlow and Alysia Pringle                                           Lora McCann & Alyssa Wooten, Staffer for Rep. Curt Clawson 
 

Judy Perkins 
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