2019 SABCS : Metaplastic Breast Cancer Global Alliance
San Antonio, TX : December 10-14, 2019
Meeting for San Antonia Breast Cancer Symposium
San Antonio, TX : December 10-14, 2019
The Metaplastic Breast Cancer Global Alliance was accepted to exhibit at our first SABCS Symposium. We were well represented and maintained a busy booth. Many professionals are interested in learning more about us and Metaplastic breast cancer. Every conference we attend offers us valuable time to collaborate and share information. Jim Harvey Sy met an oncologist from Saudi Arabia that successfully treated a metaplastic patient that had a complete response with this immunotherapy protocol : https://pubmed.ncbi.nlm.nih.gov/31690713/
We were able to share our Diagnosed Member Map at our Booth from a LapTop and some Group Member Polls that we felt were valuable.
MpBC advocates supporting our busy booth:
Our handouts:
Breakfast with the Researchers at Marriott Riverwalk Cactus Flower Resturant:
Scientific Keynote Speaker- Scott Gottlieb, MD (FDA)
I was able to represent the MpBC Global Alliance, Inc. this past March 5th -8th 2020 for the Miami Breast Cancer Conference. Before she passed away this past January, Patti Hennessey the late wife of Mike Hennessey CEO & President of MJH Life Sciences arranged for me to attend. Patti was originally diagnosed in 2011 with ovarian cancer and was also BRCA+. She joined our group in 2018 after being diagnosed with Metaplastic Breast Cancer. She fought a hard, long battle. She managed to beat all the odds until metastatic disease was found in her brain this past January. While she still carried on with a positive outlook she passed away January 28th. I remember her expressing her joy with the birth of her grandchildren. It was a shock to Susan Oran and I as we communicated often with her and she was our go-to-expert in regards to the BRCA mutation.
I was privileged to attend the Patient Keynote Address done by an energetic young metastatic Nalie Agustin and was blown away by her documented story. This year and forward the Keynote Address is renamed “The Patti Hennessy Keynote Address”. Her son, Mike Hennessey Jr. did a touching tribute. You can visit her story here: https://www.mpbcalliance.org/news/patti-member-story-spotlight/
My takeaways: Metaplastic Breast Cancer is not on the “general” research radar. Triple Negative Breast Cancer is and there were sessions in regards to TNBC. These conference days begin at 6:30am and can go into the evenings. I am learning to navigate my way through the schedule and pick and choose which sessions are of most value for our rare group. I do not have a medical background but tend to understand and pick up on details that may help keep us up to date on treatment options.
What I have learned? This research takes a long time! Nothing stands out for me to consider focusing on or report other than Immunotherapy is advancing in combination with other targeted options or chemotherapy. Focus was also placed on identifying biomarkers to benefit from precision medicine.
ASCO and SABCS attract more global experts. MBCC, for now is a bit more intimate and relaxed, which allows personal interaction with the most knowledgeable experts studying and treating the most difficult breast cancer cases. At First, I was nervous to sit in on “Meet the Facility Case Discussion” sessions but by the second day I relaxed a bit more and listened and learned about difficult cases that treating oncologist are being challenged with.
Due to the Coronavirus some Faculty did not make it in town. Luckily, I was still able to introduce myself and our organization to these top research oncologists: Debu Tripathy (MD Anderson), Patrick Borgen (Maimonides Medical Ctr), Michael Alvarado (UCSF), Adam Brufsky (UPMC), Judy Boughey (Mayo) Fleure Gallant (Miami Med). I was also able to reconnect with Hope Rugo (UCSF).
To date our Metaplastic Breast Cancer Global Alliance, Inc. has been represented at ASCO 2019, SABCS 2019 and now Miami Breast Cancer Conference 2020. We are making headway. This is tough and we have a great team with Susan D. Oran, Stephanie Oran, Casie A. Houmes (PA), Jim Harvey Sy, Mary Anne Baysac (MD), our supports from the Diagnosed Women’s only Group and The Support and Information Group run by Linda Pirkle and our Growing Global Communities. Together we are all “Supporting The Advancement Of Research Into Metaplastic Carcinoma of the Breast”
Our future will be focusing on gathering data with Ciitizen and we recently have been introduced to a dedicated researcher supporting Dr. Stacy Moulder’s efforts affiliated with MD Anderson, Clinton Yam M.D. We are seeing the benefits from his assistance and look forward to his involvement.
ASCO 2019 : Metaplastic Breast Cancer Global Alliance
Chicago, IL : May 31st– June 4th 2019
Meeting for American Society of Clinical Oncology
Chicago, IL : May 31st– June 4 2019
The Metaplastic Breast Cancer Global Alliance was excited to qualify for an ASCO-Sponsored Patient Advocacy Booth this past May 31st through June 4th, 2019. This annual meeting of the American Society of Clinical Oncology provides nonprofit patient organizations the opportunity to meet, interact and exchange information with approximately 40,000 meeting attendees from all over the globe.
Florida -- 25
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South Carolina -- 6
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Georgia -- 12
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Alabama -- 4
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North Carolina -- 9
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Tennessee -- 8
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Mexico -- 1
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Texas--40
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New Mexico -- 8
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Arizona -- 7
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Utah -- 2
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California -- 35
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Oregon -- 6
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Montana -- 1
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South Dakota -- 1
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Minnesota -- 7
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Iowa -- 5
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Illinois -- 22
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Wisconsin -- 6
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Michigan - 17
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New York -- 18
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New Jersey -- 11
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Pennsylvania -- 16
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Maryland -- 8
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Washington State -- 5
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Virginia -- 11
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South Africa -- 1
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Costa Rica --
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Romania --
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Germany -- 6
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Netherlands -- 1
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New Hampshire -- 1
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Kentucky -- 7
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Indiana -- 9
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Greece - 2
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Poland - 1
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Ohio-- 10
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Missouri--7
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Colorado--6
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Nebraska--3
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Curacao--1
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Louisiana--7
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Spain--3
Connecticut -- 1
Hawaii-- 1
West Virginia-- 2
Maine-- 2
Massachusetts--2
Puerto Rico--1
Mississippi--1
Kansas--2
Philippines--1
Ontario Canada-- 16
Manitoba Canada-- 2
Alberta Canada-- 6
Nova Scotia Canada-- 1
Western Australia--8
Queensland Australia--6
New South Wales Australia--3
Victoria Australia--5
New Zealand--6
Malta-- 1
India-- 2
Scotland, United Kingdom -- 3
England, United Kingdom -- 22
Republic of Ireland -- 1
Alaska -- 3
Singapore -- 2
Turkey -- 3
Arkansas-- 1
U.S. Virgin Islands-- 1
Nevada-- 2
Wyoming--1
Argentina-- 1
Saskatchewan Canada-- 1
Newfoundland Canada--1
Croatia-- 1
Wales, United Kingdom-- 1
Paraguay South America-- 1
North Dakota -- 1
We were able to share our Diagnosed Member Map at our Booth from a LapTop.
Members, Family and Friends
We were very fortunate to have ten diagnosed members, family and friends attend this valuable conference and assist our busy booth. We were thrilled with the welcome we received from doctors all over the world who were surprised to see a patient advocacy group representing MpBC! We shared information with many doctors and even made a short video with a doctor from Brazil so that she could provide better support to her patients!
“Raising Global Awareness and Supporting Research for Metaplastic Breast Cancer”
Our handouts:
Continued Need for Research
The week was capped off by an early-morning session on Monday the last day of the conference, delivered by Dr. Stacey Moulder, that highlighted Metaplastic Breast Cancer and the need for research.
Take Home Points and Conclusions
ASCO is the largest venue for sharing cutting edge scientific and educational developments in oncology and we were very proud of all our efforts and how we represented our rare community.
Meeting with Dr. Moulder at our Booth
Other Patient Advocates We Met
Ian Still Sporting Our Shirt!
Best Memories and Takeaways from ASCO 2019!
Susan D. Oran– “For me, the highlight was hearing Metaplastic Breast Cancer discussed in a session attended by hundreds of doctors at 8am and meeting with Dr. Moulder again. Eating dip-n-dots with my oncologist Dr. Michael Nissenblatt and meeting all of you wonderful people and seeing how we were able to ban together towards our common goals so easily!”
Nancy McCormack Buschener– “Meeting all of you and your amazing doctors. I learned so much! Oh and the cake building!”
Sue McCaldon– “For me it was meeting you all and having the opportunity to go into sessions to learn so much. Also, seeing my doctor and finding my drug trial poster and talking to the research people in the drug company.”
Dr. Janku stopped by to say Hi!
Jim Harvey Sy– “Best part was meeting you guys and learning that there is so much out there focused on finding a cure for cancer”
Casie Friedrich- “For me it was seeing oncologists and other oncology professionals from all around the world looking to us for information to better help their patients! And the Lattes with your face on them!”
Stephanie Oran– “Hearing Dr. Moulder say that social media has provided a way for doctors to meet patient advocacy groups (like us!) Oh and all the free snacks!”
Laura Houmes– “My first takeaway is WOW! I am completely exhausted but was worth all our combined efforts. I can’t say there was any “best” part of our ASCO gathering. The whole event was a blessing to me and more than I could have imagined. Metaplastic breast cancer brought us all together and we all are trying to make a difference. I believe we made all who have donated to our nonprofit proud!”
Finally, just some images from our time at a local historical, 1800s haunted AirBnB!
