I want to share my experience and what it means to be a Project LEAD Institute graduate and patient advocate. Application for scholarship and letters of recommendation must be submitted to be accepted into the program. The Project LEAD Institute strongly supports the education and involvement of patient advocates in both research, action, and the education of the community they serve, locally and nationally. This is a portion of a statement from the web page giving you a sense and focus of the LEAD graduate program:
The Project LEAD® Institute is a six-day intensive science course for breast cancer advocates covering the basics of cancer biology, genetics, epidemiology, research design and advocacy.
I learned about the program through two fellow breast cancer survivors, Michael Singer, a male breast cancer survivor, and Terry Arnold, an advocate for the Inflammatory Breast Cancer Community. I met them both at SABCS, San Antonio Breast Cancer Symposium 2016. They attended Project LEAD and encouraged me to apply. I want to thank them both publicly for the inspiration to apply and their own continued advocacy work.
LEAD Registration and Arrival
I arrived at Project LEAD Institute 2017 in early July. It was held in San Diego and the weather couldn’t have been better coming from the scorching heat of Arizona. Registration took place Sunday afternoon as the forty-one soon-to-be LEAD graduates received badges and a massively heavy notebook. The notebook contained the week’s agenda, slide presentations, and contacts to all the incoming advocates, faculty, and staff. The notebook continues to be a valuable resource to continue networking opportunities with fellow advocates. We stay connected as valuable resources for each other.
I did not know if I would see anyone there I met from previous conferences or on-line social media interactions. I was pleasantly surprised to know a friend was going to be there, a fellow advocate, Stacey Tinianov, AKA, @coffeemommy, who I also met at SABCS in December of 2016. I posted a tweet I had arrived for the LEAD Program hoping other advocates would see it knowing how connected many of us are through social media . I got an immediate text from Stacey saying she would be there, too. I was thrilled to see her again. She introduced me to her roommate, Kirstin Litz, AKA @2BACancer, another fantastic advocate and breast cancer survivor.
Our classes began Sunday afternoon after registration. This was going to be an intense week of study with not a moment of time wasted. What I appreciated was the question they asked us to answer as we passed the microphone around the lecture hall to introduce ourselves. They asked us,
What is it you hope to achieve and accomplish as an advocate at Project LEAD this week?
We were told not to discuss the specifics of our advocacy but only answer the question. I liked this approach because it leveled the playing ground. We weren’t there to discuss our individual missions, communities, or outreach. The question asked gave us a verbal commitment of our goal for this rigorous week of study, to improve out skills as patient advocates.
A Day in the Life of a LEAD Graduate
We began at 8 a.m. each morning pulling out our massive notebooks and settling in with our coffee, laptops ready. We studied the basic science and biology of cancer including DNA, epidemiology, evidence based research, observational studies, clinical trials, and evaluating scientific articles in the media. Presenters included well-known scientists and researchers from some of the finest organizations and institutions across the United States.
Break out study sessions were directed by our LEAD mentor helping us review concepts presented during the morning and afternoon sessions. A scientist or research presenter was always in the study group to initiate questions to help us understand and verbalize what we learned in the presentation. Study groups consisted of smaller groups who worked on a common presentation with a specific topic for the final day of graduation.
We shared life events at meal and break time. We laughed and occasionally gave each other side way looks when we didn’t always agree on points of view. In the end, we celebrated. We applauded each other during the graduation ceremony as each of us received our certifications of completion. We hugged and took snapshots and selfies. We shared copious amounts of delicious food in a beautiful resort setting often referring to it as project FEED instead of project LEAD.
I made new friends, lifelong, I have no doubt. I met young women in their early 20’s and 30’s who were living with metastatic breast cancer whose lives are forever changed by the side effects, surgeries, and the sobering fact they are living with a disease, treatable but incurable. I met Terlisa Sheppard, an advocate who had been diagnosed once, twice, and even three times with breast cancer. She shared the story of her breast reconstruction journey with me. I immediately told her about The Journey Facebook group. She joined and has been a member since. Her smile lit up the lecture hall as we entered each morning including some wicked dance moves to get us all motivated.
As a two-time breast cancer survivor who had successful breast reconstruction, my focus is educating those in need of information and resources about breast reconstruction. I was very honored to be at LEAD but admittedly a bit uncomfortable knowing my focus was moving beyond breast cancer and educating about breast reconstruction.
The focus of my advocacy and what I would be doing with my training was never questioned until the last day. Sitting on a bench with my brilliant and thoughtful mentor, the question was presented to me. I was asked how being a graduate of Project LEAD Institute would help me in my advocacy work when my focus is on breast reconstruction. I was very appreciative she asked the question.
Simply stated I replied, “Without breast cancer there is no breast reconstruction. Patients go through fear, confusion, and over consumption of scientific and medical information when confronted with a breast cancer diagnosis. Who do these patients turn to for guidance? These training opportunities allow me to serve my community better.”
Patient Advocacy Comes with Responsibility and Challenges
I want to continue to be a trusted resource but it comes with responsibility and challenges. How are those challenges met? Through programs developing advocate skills to understand the science behind a disease effecting close to a quarter of a million women and men every year in the United States alone. I will continue this Journey of educating those in need. Attending Project LEAD gave me the skills to accept the responsibilities and challenges of being a trained advocate committed to serving my community.
This is what I learned about advocates I met during my week at the LEAD Institute.
Advocates are fierce and brave. They live life with a bit of a frenetic time line to do as much as they can while they can. My roommate has been living with metastatic disease for several years. What an inspiration! The second morning we were there, I was in the bathroom preparing for the day and I heard her on the phone and she was crying. She received a phone call from her community. One of their fellow metastatic sisters died. I went over to hold her. She wiped her tears and continued with her day. She explained, this is part of her life now, the frequent loss of friends.
We shared laughter and personal stories of our “sassiness” after cancer. I loved this moment with a new advocate friend who, like me had DIEP flap surgery after mastectomy. She decided to show her “sassy” through a deeply meaningful tattoo over her abdominal incision.
I was inspired and exhausted as many were when we left at the end of a long, intense week.
It gave me a renewed sense of purpose. The LEAD Project and being a graduate reinforced my purpose and passion as a patient advocate because of who I met and what I learned. Patient advocates are here to be heard. Their educated, informed, and passionate voices make a difference across a variety of health care sectors and communities. I encourage you to listen to us, ask us questions, value our wealth of knowledge and the lived experience we bring to the table, and most importantly, invite us to share in conversations about how we can improve the lives of patients we all focus on daily. The collaboration between the medical community and advocates can only improve the experience for others.
I salute all my fellow LEAD graduates and once again thank NBCC for this opportunity!
Well said and great read!
Thanks much, Kirstin! It was an amazing opportunity and I met so many inspiring women, men, advocates, scientists, and researchers.