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Volunteer Spotlight - Debbie Setuain, Romane Petit Joseph, Kirstin d'Incelli & Annie Brickel

January 01, 2020

Volunteer Spotlight - Debbie Setuain, Romane Petit Joseph, Kirstin d'Incelli & Annie Brickel

Annie Brickel, Kirstin d'Incelli, Romane Petit Joseph and Debbie Setuain are South Florida's State Impact Leaders. They also hold additional roles: Annie is a Patient Advocate Leader, Kirstin and Romane are Peer Navigators, and Debbie serves as FORCE's Board of Directors Treasurer. Their diverse personal experiences and their incredible passion for helping others make them an incredibly dynamic team. We greatly appreciate their dedication to raising awareness with healthcare providers, providing support to individuals and families and fundraising over $10,000 for FORCE. Thank you for making a tremendous difference to so many people.

Annie Brickel

When I was diagnosed with the BRCA1 genetic mutation in 2010, I never realized the full impact this discovery would have on the lives of my family members and me. At the time, I was not as educated about genetic mutations as I am today, so after notifying my immediate family members and learning several of us, including my daughter, brother, niece, and cousin tested positive for the BRCA1 genetic mutation, we all began our separate journeys which led us down different paths. My daughter and I chose surveillance, my niece's journey led her to choose mastectomy and reconstruction, and my cousin's journey led her to an eventual discovery and diagnosis of ovarian cancer. Our paths collided in August 2013, though, when my daughter was diagnosed with a fast-growing Stage 1 Triple-Negative invasive ductal carcinoma. This is also when FORCE came into our lives. Being involved with the FORCE community as a volunteer has provided me, along with so many other Survivors, Previvors, and their family members, to give back the much-needed help and support that my family received in our time of need. As difficult and life-changing as a cancer diagnosis is, at least my daughter, unlike my mother, was able to take action against her disease. As difficult and emotional as it has been to live with the knowledge that I have passed this gene mutation on to my children, I, unlike my mother who died at a young age, had a choice. My children, through their respective journeys, have had choices. My grandchildren, should they test positive, hopefully, through the research with which FORCE is involved, will have even more and better choices. Being involved with the FORCE community continues to allow me to pass on the knowledge, resources, and much-needed support one needs to navigate this daunting journey. I realize how fortunate I am to live in this time and this environment, one that has allowed me to move forward with what I believe were the right decisions for my family and me. I wish my mother and so many others whom we have lost, were as fortunate. This is why I am a FORCE volunteer.

Kirstin d'Incelli

I am extremely excited to meet you at a local FORCE event, share my journey, insight, and support through the Peer Navigation program.  I am positive for the BRCA2 genetic mutation and underwent a prophylactic bilateral mastectomy 8 years ago and a salpingectomy 3 years ago. I have a 2-year-old daughter who was conceived via IVF, and we chose to do Pre Genetic Screening (PGD) for our embryos to eliminate the BRCA mutation from our family. After finding out I was BRCA2 positive, I turned to FORCE for much of my information and research. FORCE was a great resource for me, but I wanted to connect on a more personal level with women like myself. There are not many people who have gone through a bilateral prophylactic mastectomy, salpingectomy, or PGD for BRCA2 testing.  Therefore, I am excited to share my experiences through the Peer Navigation Program with others who may be interested in learning about BRCA and IVF/PGD.  I also enjoy being a part of a local community where others who have been affected by hereditary cancer can come together to find support, learn from, share and be empowered.  The mission of FORCE is to improve the lives of individuals and families affected by hereditary cancer. My goals for the group include community outreach and education, connecting people facing hereditary cancer at support meetings, media education, and some fun local activities/fundraisers. Thank you for allowing me to share my story and I look forward to meeting and learning from so many other strong participants.

 Romane Petit Joseph

I am a Haitian mother of one daughter, Tesha. Romane enjoys healthy eating, working out, and traveling. In 2013, Romane became the first in her family to be diagnosed with breast cancer. She is also the first to test positive with the BRCA2 genetic mutation, followed by her mother and sister. As a six-year survivor, with everything she has been through to beat hereditary breast cancer, Romane is proud to identify herself as a model of bravery, empathy, strength, and resilience. Her goal is to inspire, inform, and educate women who are experiencing the same suffering so they can face their moment of truth with more comfort and hope. To achieve her mission, Romane volunteers with the FORCE South Florida Outreach Program and participates in fundraising activities to provide more resources to advance research on behalf of women and men affected by hereditary cancers. She is dedicated to the fight for the cure.

 Debbie Setuain

Debbie is a mother of two sons who enjoys running, outdoor activities, and counseling individuals and families regarding cancer prevention and survivorship. In 2010, she was diagnosed with triple-negative breast cancer and the BRCA1 genetic mutation. As a nine-year survivor, Debbie feels her hereditary cancer experience has made her stronger. She is on a mission to raise awareness about genetic counseling and testing, so others can have choices to reduce their risk of developing hereditary cancer to avoid what she went through. As a FORCE volunteer in South Florida since 2011 and Board Member since 2018, Debbie works tirelessly to empower others with information to save lives. She fundraises with a purpose for research, advocacy, and support. Her dream is for there to be an end to hereditary cancers.

Posted in: Volunteer Spotlight
Tags: FORCE , Volunteer

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