The Heart Behind the Mission
Our Roots Are in Family, but Community Goes Beyond Genes
Jenny is a lifelong Rare Disease Advocate for Familial Adenomatous Polyposis (FAP) and Short Bowel Syndrome (SBS). Diagnosed at age 8, her journey has been defined by eight major surgeries and the challenges of medical PTSD. These personal experiences fueled her passion for patient empowerment and mental health advocacy within the chronic illness community.
In 2012, Jenny established Life’s a Polyp to raise awareness and build supportive online communities. Her impact extends to the founding of the NORD FAP Research Fund in 2015 and the publication of her first children’s book, Life’s a Polyp with Zeke and Katie, in 2022. Jenny’s mission is to ensure no one navigates rare diseases alone, providing others with the tools and advocacy she wished for during her own childhood.
The Family Behind the Foundation
Mama
Jenny and her mama had a special relationship as they shared the same rare diseases of FAP and Short Bowel Syndrome. Mama was diagnosed with colorectal cancer shortly after Jenny was born and they nearly lost her to it to complications. Immediately upon mama being wheeled into recovery following colon and rectum removal with a permanent ileostomy, her stoma had turned black requiring additional surgery resulting in Short Bowel Syndrome. She spent a month in the ICU and was determined to be at such high risk that the ICU nurses bent the rules and allowed Jenny’s father to bring her in to see mama until mama began to stabilize. Mama underwent the Whipple procedure in 1994 due to FAP and experienced a long and difficult recovery. In her later years, Jenny joined her father in caregiving to mama until her unexpected death in 2024. Mama was an incredible fighter and died as she lived – a medical anomaly, stubborn to the last breath, and true to herself in her strength. Mama was a formidable medical advocate for Jenny throughout her life and taught Jenny many of the advocacy skills she shares with others.
To learn more about Jenny’s mama,
Grandpa
Jenny and her grandpa were extremely close. He was a formidable Army Veteran of WWII. He was a strong man who never let his FAP or ileostomy stop him from what he wanted to do. Jenny greatly admired him but didn’t understand his strength in relation to FAP until toward the end of his life and afterward. He developed colon cancer from FAP in the late 1950’s and underwent a colectomy with reconnection. In 1994, he developed rectal cancer from FAP requiring additional surgery, ileostomy placement, and radiation. He was in critical care following this surgery.
In 2000, Jenny lost him to esophageal and stomach cancer from FAP. His medical doctors failed to complete the necessary surveillance FAP requires in spite of problematic symptoms he was having. By the time the esophageal and stomach cancer was found, treatment was no longer an option. His death was a great loss to Jenny and her family.
To learn more about Jenny’s grandpa, read Touch of Cancer
Dad
Jenny’s dad is the glue that’s held them together as a family unit. He provided all the necessary care and support that Jenny’s mama and herself have needed with their rare diseases and chronic illness. He is always willing to do whatever is required and is a steadfast support, they’ve been beyond blessed to have him in their corner. Jenny’s dad remains not only a caregiver to her with her health but also an active part of LAPF in the background and supports Jenny in advocacy efforts.
To read more about Jenny’s dad and the role of a caregiver,
How It All Began
From Personal Struggle to Purposeful Solutions
Life’s a Polyp began in 2012 as a response to a lifetime of medical challenges. After being diagnosed with Familial Adenomatous Polyposis (FAP) at age 8 and subsequently Short Bowel Syndrome (SBS), Jenny Jones realized there was a desperate need for more than just medical treatment—there was a need for community and understanding. What started as a personal blog to raise awareness has grown into a global advocacy platform, a research fund, and a source of comfort for families navigating the complexities of rare genetic conditions. As Life’s a Polyp Foundation, we turn years of hospital stays and surgeries into a roadmap for others to find their voice and their strength.
Our Team
Experts by Training, Advocates by Heart
Life’s a Polyp Foundation is built upon members with a heart for advocacy and changing the course of FAP. Each member has seen the impact of FAP and knows there’s a better way forward and works to make that reality. Are you passionate about making life better for FAP patients everywhere? Visit our Events & Proclamations page for ways you can begin your own FAP advocacy work close to home!
Rebecca Baker
Secretary, FAP Advocate
Rebecca Baker is a passionate advocate and devoted mother. Her connection to FAP spans generations and has shaped much of her life’s journey. Diagnosed as a teenager, after growing up with a family history of FAP, Rebecca has spent years navigating realities of living with a hereditary cancer syndrome, including ongoing surveillance, major surgeries, and the lifelong challenges that come with managing a complex medical condition.
In addition to living with FAP, Rebecca’s health journey has included Gastroparesis, Postural Orthostatic Tachycardia Syndrome, Hypermobile Ehlers-Danlos Syndrome, and significant mental health challenges. These experiences have given her a unique perspective on the realities of living with chronic illness, disability, and the emotional toll that can accompany long-term health struggles. Rather than allowing those challenges to define her, she has used them to fuel her passion for advocacy, education, and supporting others facing similar battles.
As both a patient and the mother of a child living with FAP, Rebecca understands the fears, uncertanties, and difficult decisions that families often face. She is deeply committed to ensuring that individuals and families affected by hereditary cancer syndromes have access to support, resources, and a community that truly understands their experiences. She is particularly passionate about creating opportunities for children and youth to connect with peers, share their stories, and feel less alone.
Rebecca believes that advocacy is rooted in honesty, compassion, and the power of lived experience. She strives to be a voice for those who may not yet feel ready to speak for themselves and works to raise awareness of both rare diseases and the often overlooked challenges of living with chronic illness and mental health conditions.
Guided by her personal motto, “No Colon, Still Rollin’,” Rebecca approaches life with resilence, humor, and determination. Through her work with LAPF, she hopes to help others find strength in their journeys, embrace life beyond their diagnoses, and know that they are never alone.
Ann Lamphere
FAP Advocate
Ann Margaret Lamphere is a rare disease advocate whose life and purpose were shaped by a diagnosis she never expected – and a family history she didn’t fully understand until decades later.
Ann grew up surrounded by cancer without knowing the cause. Her father died from FAP related cancers – colon, esophageal, and liver. Her grandmother’s brothers also died from cancers now known to be tied to FAP, with colon cancer being the most common. But for generations, the connection remained hidden.
Ann’s own symptoms began in high school: persistent stomach and digestive issues that were repeatedly dismissed as “just an ulcer”. In 1995, her first EGD revealed a carpeting of polyps in her stomach – yet they were brushed off as insigificant, and no further testing. No one recognized them as a warning sign of a hereditary cancer syndrome. No one looked deeper.
Those same stomach polyps eventually led to her first colonoscopy in 2017, the moment everything changed. That was the day she first heard the words Familial Adenomatous Polyposis. The diagnosis didn’t just change her future; it rewrote her past and explained the losses her family had endured.
For a long time, FAP felt like a shadow – something that had taken too much already. But everything shifted when Ann discovered Jenny’s page, Life’s a Polyp, which led her to the story of Carleton Myers. His life, strength, and legacy showed her something she had never been told: FAP didn’t have to be a death sentence. Not for her. Not for anyone else.
That realization lit a fire in her. It was the moment her advocacy came alive.
Ann began raising awareness so others wouldn’t have to fight for a diagnosis the way she did – dismissed, overlooked, and unheard for years. She committed herself to helping families recognize symptoms earlier, understand their genetic risks, and push for answers when something feels wrong.
Ann is also the creator of Pebbles’ Golden Stripes, a children’s book and character that celebrates differences and gives families a gentle way to talk abotu rare diseases, identity, and courage. Through storytelling, community-building, and open conversation, she transforms her lived experience into connection and hope.
Ann designs FAP Awareness tumblers and coffee mugs, including those honoring Carleton Myers, and brought FAP Awareness Week to Wisconsin, expanding visibility and conversation around hereditary colon cancer syndromes.
Ann’s mission is deeply personal: to ensure that every person navigating a rare disease feels supported, informed, and valued – and to turn her own diagnosis into a source of empowerment for others.
Mission & Vision
Our Compass for the Journey Ahead
Our Mission: To empower individuals living with Familial Adenomatous Polyposis through education, advocacy, and community building, ensuring every patient has the tools to navigate their health with confidence and support research for new treatment options.
Our Vision: To create a world where a Familial Adenomatous Polyposis diagnosis is met with immediate support and specialized resources, ultimately funding the research necessary to improve the quality of life for future generations.
Get Involved with Life's a Polyp Foundation
The work of eradicating rare disease is never ending and requires many hands. If you have the ability and freedom to volunteer with us, we welcome you with open arms! Help us spread the word to your friends and relatives – If you know someone who would make a great addition to our team or an interested researcher/clinician, please let us know!