PALTOWN's Community Leadership Program
Our community leaders are the heart and soul of our work. These patients and caregivers manage the more than 120 groups in our colorectal cancer community COLONTOWN, shape our Empowering Patient Leaders Workshops, and research to deliver the Clinical Trials Education that PALTOWN is known for. Some of our Leaders also serve as Deputy Mayors on the COLONTOWN Management Team.
We are grateful to the Colon Cancer Coalition for recognizing our extraordinary group of Community Leaders, all giving back through their commitment to the support and education of their “neighbors.”
2020 Community Leaders Program Sponsor
COLONTOWN Community Leaders
I am a Stage IV colorectal cancer survivor, diagnosed in 2013. I’ve been part of the COLONTOWN community for more than four years. After joining, I quickly took on leadership roles. I serve on the COLONTOWN Cabinet as a Deputy Mayor, am the Community Leader for our BLUE LIGHT SPECIAL COMMUNITY and am also a Neighborhood Host for numerous groups. I have attended and helped present at all of PALTOWN’s Empowered Patient Leader Workshops.
COLONTOWN has given me a voice and a purpose that I never dreamed possible. Helping others “Find their people” is a passion.
I joined COLONTOWN because I was looking for support for myself and my husband, who had been diagnosed with Stage 2 colon cancer. I have enjoyed getting to meet everyone in COLONTOWN and especially liked attending my first Empowered Patient Leader Workshop this summer in Minneapolis. I’m now serving as the Deputy Mayor for our Spiritual Enclave. I’m married to Tim Basner and have 2 adult age kids, Rebecca and Jimmy. In my spare time I like to get together with friends, travel when I can and read books. I have a huge passion for helping people and helping animals. Our family volunteers for a local dog rescue helping pregnant mommas, puppies or dogs that have a medical issue that need special care. My family will tell you I love to meet people and talk to them. I look forward getting to know more people and helping out as I can.
I was diagnosed in December 2011 with Stage I Rectal Cancer. After progressing to Stage IV four years later I needed to find support and information, which led me to COLONTOWN. It was there that I made friendships and connected with people that have loved, supported and guided me through some of my toughest days. And, to my surprise, also offered education and information from dealing with medication side effects to finding the most recent and innovated cancer treatments.
I found my voice with COLONTOWN and started to take charge of my care, working alongside my oncologist to figure out the best treatment plan that allowed for a better quality of life. I felt the desire to give back and help others gain everything I had from such an amazing group of patients and caregivers. After attending an Empowering Patient Leaders Workshop I got right to work starting a group local to me in Connecticut, helping to onboard and admin a large neighborhood for Rectal Cancer patients and get involved in organizing and planning future EPL meetings. I am beyond grateful to be a small part of a huge blessing in the middle of a difficult disease.
I am a Stage 3b rectal cancer survivor.
Immediately after my diagnosis in 2017, I joined COLONTOWN. By training, I am a DVM PhD, with post-doctoral training and research experience in Cell and Cancer Biology. After I joined COLONTOWN I became instantly aware of how I could use my background in Cancer Biology, to educate fellow patients and caregivers, as they navigated their cancer journey.
In COLONTOWN, I created, and now admin, the CRC101 educational neighborhood, which is a landing space for all new members. Here, I distill the highly technical CRC-relevant information available on the internet to easily-understandable nuggets. CRC101 attempts to provide people a “road-map” to their cancer journey and aims to facilitate CRC-specific learning, by meeting patients and caregivers at their level of understanding.
New COLONTOWN members, as they become “students of their disease,” are able to navigate & utilize our Clinical Trials neighborhoods better. As Community Leader for COLONTOWN’s Clinical Trials neighborhoods, I keep track of discussion in these groups and provide informational posts in non-technical language as necessary. We often see how this flow of information comes full circle back to patients’ interaction with their physicians; recently, for example, I have been helping members understand the potential and use of liquid biopsies. As a result, we now see COLONTOWN members slowly educating their doctors about this novel testing strategy.
The time I have spent in COLONTOWN has greatly broadened my view of cancer research and in some ways brought the kind of clarity and perspective that is only possible with the experience of cancer as a patient. I am able to leverage this unique perspective as a Patient Advocate with the Stand Up to Cancer CRC Dream Team, various cancer and CRC specific meetings and conferences, and on Twitter (@manjuggm). This enables me to engage in discussions with leading clinicians and researchers in the CRC field and bring that information back to benefit the COLONTOWN membership. My impact in this advocacy space has been reflected in projects where I help bring patient perspective into clinical trial design.
I envision colorectal patient advocacy and education as an integral part of my life moving forward, and am looking for opportunities where my training, cancer experience and collective patient perspective gained from COLONTOWN can be used for the benefit of society.
I am a stage II colorectal cancer survivor diagnosed in 2016. I have been with COLONTOWN for 3 years. I am Community Leader for the AGES AND STAGES groups. In this role, I oversee these groups, making sure that they are running smoothly, help to onboard new members and am in contact with the admins if there are any questions or issues. I also admin for the 2NDAVE. (stage II group) and MOTOR CITY CREW. In these groups, I make sure all posts receive responses, fire up important discussions and post current scientific articles pertaining to these groups. I have attended 2 Empowered Patient Leader Workshops.
My goal is to make an impact on the CRC community by helping to improve screening rates, providing much needed support and connections, helping guide people to critical and potentially life-saving information they need in finding clinical trials or information on neuropathy etc. I am also currently a panel member of CRAN (Colorectal Awareness Network). This group is part of the American Cancer Society and its sole purpose is to raise the screening rate to 80%.
Helping others is my passion and I would like to share an amazing analogy that a friend, Charles, who I met at the 1st Empowered Patient Leader Workshop, shared with us at the workshop. He compared us to glowsticks. He held up a glowstick and said, after snapping the stick, a glowstick needs to be broken to shine. Just like us when we receive the cancer diagnosis, we feel broken but it also gives us an opportunity to shine by helping others and making a difference. COLONTOWN gave me support when I needed it the most and I hope that I can give that back to those who may feel lost in their diagnosis and are searching for help.
My name is Fernando Ruiz del Prado (but please call me Fer).
My favorite phrase is “Life is a Journey” because pretty much encapsulates the story of my life. Born and raised in Mexico City, when I turned 24, I grabbed two bags, my skateboard and my bass and headed to Boston, MA with enough savings to pay for my first year of college. I worked many jobs to pay for my education. Fortunately upon graduation I was offered a job at WGBH 89.7 fm Boston’s NPR as a production audio engineer.
By 1994 I also started my own production business and in 1995 I landed a large corporate communications account. But in June 1996 at 33 yrs. old my life came to a complete halt because I was diagnosed with stage III Colorectal cancer. Because of my young age it took almost too long to get to proper attention to my symptoms. Finally they reacted and went under major surgery followed by nine months of chemo.
Fast forward to June of 2019 when I rang my 22nd NED cancerversary!
My COLONTOWN journey: In 2010 Erika rang my phone, told me about COLONTOWN and invited me to March to DC two years in a row. I’ve continued to be involved with this wonderful organization. In 2012 Life brought me Toronto, Canada and I moved full time in 2015. Since 2017 I’ve taken on a deeper role because of my cultural and professional background experience. I started to work as an admin for several groups and helping as marketing & communications advisor for Erika and COLONTOWN.
In 2018 I attended the first EPL [Empowered Patient Leader] workshop in Washington DC.
Currently I am Community Leader for all the international groups [True North Crew in Canada, Straya group in Australia, Villa Colon group for worldwide Spanish Speakers, and Darmastad group for German speaking community.] I also help on the Beantown group (the Boston group).
I am also assist with branding, communications, marketing, fundraising, video production and serve as workshop producer & A/V guru. I’ve helped produced the Denver, Boston and Minneapolis workshop. I spend many hours a day and plenty every week tending to all these groups and all the branding and communications needs as well as working with PALTOWN staff on ways to fundraise and raise COLONTOWN’s profile in the outside world.
But if you know Erika and COLONTOWN’s story you’ll understand why! If you don’t know either you’ll want to! My journey with PALTOWN is a labor of love.
Stacey has had the bittersweet opportunity to watch COLONTOWN grow almost from the very beginning. She joined the town while her husband Rick was in treatment for stage IV adenocarcinoma of unknown primary, and has been involved ever since.
Sadly, Rick died of his disease in 2014. Currently Stacey oversees the caregiver neighborhoods of COLONTOWN which include private areas for teen children of CRC patients, primary caregivers of patients, parents of adult patients, a grief group for “former caregivers” and several more. She works with an incredible group of administrators who keep the carepartner neighborhoods going strong daily.
Stacey is particularly proud of starting the private group reserved for Stage IV caregivers only, as well as starting the group PALLIATIVE PATHWAYS for both caregivers and patients. She has made strong friendships with patients and caregivers alike during her time in COLONTOWN, and has had the absolute honor of talking several of those friends through their own, or their partner’s end-of-life.
Outside of COLONTOWN, Stacey owns and runs a group of small businesses. She attempts to play golf (Rick’s favorite sport!), she is a tap dancer, and a (begrudging) beginner runner.
I was diagnosed with Stage IV right-side colon cancer in January, 2007. Recurrence in August, 2015, which I’m still dealing with. I’m Lynch. I’ve been with COLONTOWN since 2011. Attended Call on Congress in the early days of COLONTOWN, and also attended the first Empowered Patient Workshop. I am the Administrator for Sunshine State Crew, and Community Leader for all our local crews around the United States. I love advocating, and helping others with their diagnosis.