Empowered in Charleston: Women got “Engaged” with BISA to Advocate for Better Breast Implant Safety
Breast Implant Safety Alliance (BISA) advocates from across the country traveled to Charleston, South Carolina, this summer to “Get Engaged with BISA.”
The June 2023 Get Engaged event offered BISA advocates a chance to connect in person and build strategies to advance breast implant safety and women’s health issues.
When the Breast Implant Safety Alliance (BISA) was founded in 2019, advocates hoped there would be more awareness and better safety systems. Unfortunately, the same issues continue, and new risks continue to emerge. The four-day in-person meeting provided advocates with training and strategy sessions for advancing BISA’s mission of promoting patient and consumer safety.
Our time together included open conversations to address concerns and discuss what motivates us and where we want to go as an organization. We openly and candidly discussed our strengths and passions and how we can contribute. Collectively, we are motivated to send out a tiny ripple that gains momentum.
Maria Gmitro sharing the event’s agenda | Photo credit: The Narrative
Some of the topics discussed:
communication and marketing
calls to action
improved informed consent
upcoming legislation
insurance coverage issues
breast implant-associated illness (SSBI) & cancers (BIA-ALCL & BIA-SCC)
adverse event reports trends
and the need for balanced information from the medical community and advocates.
Many advocates were meeting each other in person for the first time, and advocates described the camaraderie as magical. There is a special bond that forms when patients turn suffering into purpose.
Attendees also participated in team building and community engagement, and part of the meeting was filmed for an upcoming documentary.
Event attendees:
Sarah Beckom, Arkansas
Jennifer Cook, Georgia
Julie Elliott, Canada
Sherri Gorbett, Oregon
Maria Gmitro, South Carolina
Jasmine Hermann, Florida
Madris Kinard, Pennsylvania
Terri McGregor, Canada
Heidi Rolfs, Oregon
Laura Willging, Iowa
The BISA team: Laura Willging, Heidi Rolfs, Madris Kinard, Sherri Gorbett, Jasmine Hermann, Sarah Beckcom, Terri McGregor, Julie Elliott, Jennifer Cook on June 9, 2023 | Photo Credit: The Narrative
Advocacy Meeting Updates
Jennifer Cook, BISA’s Director of BIA-ALCL Advocacy, and Terri McGregor, BISA’s BIA-ALCL Canadian Representative, presented a robust informational session on BIA-ALCL, providing expert information on the various cancers associated with breast implants including B cell and T cell lymphoma.
BISA is so grateful to these two experienced, credible, and passionate women as strong advocates. Both Jennifer and Terri have battled cancer caused by breast implants, and they continue to share their firsthand experiences and knowledge to provide support to help keep other women safe.
Madris Kinard, Founder and CEO at Device Events, provided us with updates on adverse event reporting trends. Even though physicians are not mandated to report adverse events to the FDA, the FDA receives over 90K physician reports of breast implant-related injuries and illnesses. Hospitals historically, were the largest submitter of adverse events for breast implants. This trend has lessened as the practice of medicine, especially breast implant and explant surgeries, are done in physicians’ offices. Hospitals are part of the User Facility group, which is mandated to report to the FDA. Physicians’ offices are not defined as user facilities. A good advocacy project would be to engage the FDA and Congress to change the definition of user facilities to include physician offices.
Jasmine Hermann shares her story | Photo credit: The Narrative
BISA’s Communications Director Jasmine Hermann presented an engaging session on communication and strategic storytelling. She also provided information on increasing BISA’s engagement rate and using social media effectively to amplify awareness.
Board Member Laura Willging, RN, BCPA hosted an interactive activity using labeled dice to represent breast implant surgery's potential risks and side effects. She also shared a smart handout called “Tools for Self-Advocacy: Shifting the Power Dynamics.” We thank Laura for her creative game that engaged everyone in meaningful conversations.
Updates of BISA’s collaboration efforts with various organizations were discussed, including:
Breast Surgery Collaborative Community
American Society of Plastic Surgeons (ASPS)
Patients Rising
Komen Foundation
Medical Device Innovation Consortium (MDIC)
Patient, Consumer & Public Health Coalition
USA Patient Network
Patient Safety Action Network
Community Breast Reconstruction Alliance
Harvard University
Our collaboration with these groups includes improved education for the public, increasing patient safety and access, insurance coverage for treatment and explant related to BIA-ALCL, and working on a way to help quantify SSBI, often referred to as Breast Implant Illness.
“Be strong, be fearless, be beautiful. And believe that anything is possible when you have the right people there to support you.”
“It was a multifaceted, in-person think tank, summarizing past and current topics with a forward focus on how we are going to address high priority areas of health advocacy while elevating the patient-consumer’s voice. I left feeling revitalized after our time together. It was a valuable integration session of implementing the net values of our various perspectives, experiences and strategies which culminated to consolidate ideas and goals to advance our mission of actionable caring.”
~ Laura Willging, RN, BCPA, Board Member
“As the newest member of the BISA Board, I attended the Get Engaged Event to get acclimated and learn how I can benefit BISA’s mission.
I gained so much more than getting to know my fellow Board members and mapping out a marketing plan—I got educated! I realized the importance of gaining factual information about Breast Implant Illness and associated cancers and the power of sharing our personal stories and challenges because shared experiences can change lives. There is power in collective sharing.
More importantly, I found my sisters-in-arms, women who walk their talk and care deeply for BISA's mission and each other. Their dedication, warmth, and energy were infectious! I'm excited to see how we grow from here and am honored to be a part of the team.”
~ Jasmine Hermann, Communication Director
“This event provided space to share our stories and affirm what we’ve all been through. As content experts and advocates, we have an opportunity to make a difference through collaboration with various organizations. I am excited about moving forward with this work. We have a strong group of talented advocates who will champion BISA’s mission and values.”
~ Heidi Rolfs, RN, BCPA, Board Secretary
"For me, the gathering in Charleston reaffirmed how grateful I am to be a part of such a talented, compassionate, and mission-driven team. We each come to this work with diverse strengths but a common desire to make a difference. I am excited to see us put our ideas into action in the coming months."
~ Jennifer Cook, Director of BIA-ALCL Advocacy
“This event was an amazing opportunity to finally meet face-to-face! These incredible women that I get to advocate with truly filled my soul and increased my passion to continue learning and advocating. BISA is a team with a shared passion to help others and advocate for changes. These desires are fueled by our personal experiences, and we were able to share ideas on how to grow our organization to make a larger impact. Our team complements each other, and we are stronger together. I feel so honored to be a part of BISA.”
~ Sherri Gorbett, Board Treasurer
“Words can not describe the wonderful feeling of meeting other patients and advocates who suffered and are taking action to create positive change. It was lovely to have everyone meet here in my beautiful city of Charleston and have support from my community. As always, we want to do more, but we can only do what we can with the time, energy, and resources that we have available to us.
Advocacy is a work of “heart,” and I am honored to be a part of this passionate, dedicated, and knowledgeable group of women who tirelessly volunteer their time and expertise to BISA.”
~ Maria Gmitro, BCPA, President & Founder
It’s All About Connection
The work we do can be emotionally heavy and we are thankful to have each other to lean on.
While business and advocacy were a focus for the group, we also had some special bonding time with team-building events.
We held our official Meet & Greet event at Sechey on King Street, and some of our families joined us at Party at the Point for dinner and live music. We concluded our event with a “Get Engaged” White Party on Johns Island to celebrate our advocacy “engagement.”
Acknowledgment & Special Thanks
The Narrative
Thank you to The Narrative Branding Agency, who donated a branding session and provided the team with training materials on personal brand strategy. Based in Charleston, SC, The Narrative works to bring brands to life through their unique blend of strategy, creative direction, photography, short-form video, social media, and brand activations. BISA is thankful for Lauren Gaudio and Megan Edwards's talents for empowering our team of advocates with such a generous experience and helping elevate our mission.
Gut Harmony
Thank you to Neda Smith, owner of Gut Harmony, Charleston’s premier holistic health and digestive center in Mount Pleasant, SC. Neda has supported BISA for several years, and this year, she sponsored our amazing and healthy lunch from Huriyali.
Sechey
Sechey on King Street in Charleston was the official meet-and-greet community engagement and kick-off event for the “Get Engaged” meeting. Sechey is a low-to-no alcohol boutique that offers a curated collection for sophisticated dry times and a more mindful drinking journey so you can drink less and live more. We are thankful to Elise Nelson and Emily Garlick of Sechey for helping to support the event and provide such a welcoming experience.
Rebecca Illustrated
Thank you to local Charleston artist Rebecca Meixner of Rebecca Illustrated for supporting last year’s BISA & Stand Tall AFC breast cancer event at the Principle Art Gallery and for providing a special discount for Maria Gmitro’s personal gift to the attendees. The Rainbow Row art print was a perfect gift for our team to remember our special time in Charleston.
Rebecca Hamm
Thank you to Rebecca Hamm and the documentary crew for filming parts of our “Get Engaged” meeting in Charleston and the legislation meeting in Virginia for an upcoming documentary on breast implants.
Holly Davis
Thank you to patient and advocate Holly Davis of Charleston for joining our celebration, helping with transportation and providing southern hospitality to one of our international advocates after unexpected weather delays.
Donors
While most of the donations were not used on this gathering as members funded their own travel to the “Get Engaged” event, BISA would like to thank the following individuals who donated to BISA this year: Christine Latif, Dr. Roberto Miranda, Tammy Hall, Natasha Tanguay, David Lewis, Melissa Miller, Wendy Duncan, Renee Ridgeley, and Tom Gmitro.
BISA is so thankful to individuals who have donated to our social media fundraising posts and the French-Canadian patients and advocates who contributed to a special gift from administrator Julie Elliott.
Our Families & Advocates
BISA is a 100% volunteer organization, and our team is so thankful for the support of our family members who believe in our advocates and support our cause. We are all impacted by breast implants in some way and want to support and help other women and families by providing a safer future.
The “Get Engaged” meeting was a success and, in many ways, exceeded our expectations, but it also highlighted the need for more action. We believe that women and patients deserve better, and we will continue to work toward better patient and consumer safety.
Be sure to check out our social media channels and follow the official hashtag #getengagedwithbisa for BISA’s advocacy with behind-the-scenes content.
Breast Implant Safety Alliance (BISA) is a 501(c)3 women-owned nonprofit, patient-centered organization dedicated to improving breast implant safety and awareness—through direct collaboration with consumers, medical professionals, manufacturers, regulators, and advocates. BISA is a 100% volunteer organization not funded by implant manufacturers.
Contact: Maria Gmitro, President | 843.501.6873 | maria@bisanonprofit.org