The Power of Pals: A Partner Spotlight on PMP Pals
- PFCCAP Admin
- Apr 18
- 5 min read
By Charmaine Skillman
PMP Pals and I started our rare disease journeys just one year apart, but we travelled separately for many years. When our paths finally merged, it changed my life.
I was diagnosed in 1997 with PMP/appendix cancer during a routine gynecologic exam. For about 11 years, my LAMN (Low-grade Appendiceal Mucinous Neoplasm is a rare appendix tumor) was treated in my hometown of Austin, TX through debulking every 5-7 years. But after three surgeries and a diagnostic laparoscopy, it was clear that a different approach was needed. My LAMN had spread extensively.
As this news sank in, I renewed my search for online support to help me find the right surgeon and prepare for HIPEC/CRS. I had tried years before to learn more about PMP/appendix cancer/HIPEC, but, in the 1990’s and for several years into the 21st century, online medical information was much harder to find.
It was a lonely journey in those early years. In fact, for more than ten years, I had never met another person with PMP or appendix cancer.
In 2008, I found PMP Pals and connected with this network of patients and caregivers. I learned that PMP Pals had been started in 1998 by a patient, very shortly after she was diagnosed. Through the help of Pals’ founder Gabriella Graham, I found Dr. Paul Sugarbaker, who successfully performed my CRS/HIPEC surgery in 2009. Finding PMP Pals helped put me on the path that saved my life.
And, shortly after my surgery, I finally met another Texas patient with PMP/appendix cancer – 12 years after my diagnosis.
Looking back over both my personal journey of 28 years and the support work of PMP Pals for about the same length of time, there is so much that has changed. Technology has advanced at an incredible pace, with smartphones, huge amounts of medical information online, and now artificial intelligence playing a promising role. There are new treatments – immunotherapy, PIPAC, Bromac, and more still in development.
BUT, some things remain the same. I often hear that it can still be difficult to find reliable, understandable online information and support. Patients still wonder: How do you find others who know what this journey is like? How do you find the right medical professionals?
So, unlike in the 1990s, today’s problem is not a lack of information -- it’s just the opposite. Now patients need ways to sort through a ton of information. They need trustworthy guides to help them find what is relevant to them and what is reliable, actionable information. They need to find others who can share direct experiences in an authentic and thoughtful way. The work of the Alliance to help patients and caregivers connect with trustworthy groups like PMP Pals is so important in these times of scams, money-motivated reviews, and ads bombarding us every online minute.
One way that PMP Pals has successfully reached many patients and caregivers is through its twice-weekly HOPE ZOOM support meetings. Every week, patients and caregivers meet through Zoom to encourage each other and talk about topics of interest like treatments, nutrition, and strategies to handle the emotional stress of the disease. Peer-to-peer support is vital to successfully navigating the unknowns and nuanced landscape of appendix cancer. Once a quarter, we invite a leading medical specialist to present on a current topic of interest. PMP Pals moderates the meetings which are open to patients, caregivers, friends, family, and the medical community. In May 2025, PMP Pals will celebrate five years of peer support and education by specialists. If you have not yet joined us for a meeting, we invite you to give it a try. Register at www.pmppals.net.
Other support programs by PMP Pals include:
PMP Pals Mentoring Program: Navigating the landscape of a rare disease like appendix cancer can be daunting, exhausting, and scary. That’s why PMP Pals established its 1-on-1 Mentoring program to connect patients and caregivers to volunteer support. Let us connect you to a Mentor who will talk you through the process of finding an appendix cancer specialist, explain treatment options, share expectations for immediate and long-term futures, and serve as your connection to the Hope needed to go the distance with this tricky disease. We find this free service most helpful to those newly diagnosed, but it’s also helpful to have a point person you can bounce ideas or vent to along your journey. To be matched with a mentor, email connie@pmppals.net
Pals Meet Up: This is an annual opportunity for Pals from all over to get together with other survivors to connect, share and learn together. These Meet Ups are known for incorporating a great mix of socializing and education, featuring presentations from special guest speakers. The 2025 Meet Up is in Charlotte, NC and anyone interested can learn more here: https://pmppals.net/meet-up25/
1 in a Million Walk: Appendix cancer and its related conditions of pseudomyxoma peritonei and peritoneal surface malignancies are rare cancers with no cure. This rare disease affects roughly one in a million people each year. Join us on September 13, 2025 at McAllister Park in San Antonio, Texas (also virtually online) for the 2nd Annual One in a Million 5K Run/Walk. Together, PALS is helping 2,500+ people build the emotional resilience needed to go the distance with Appendix Cancer. https://pmppals.net/one-in-a-million-5k-race-walk/
Get Well Cards: This is PALS oldest and most popular program. Sign up to receive cards when you are facing surgery or another challenging situation. Or, participate as a card writer and send a message of encouragement to another Pal. Additionally, you can also request a “Bare-Bottom Bear”. PALS will send you a cute little bear by mail, appropriately dressed for the hospital, as you head for surgery or other challenging treatment. This classic teddy bear spreads joy and makes a hospital gown worthy of a smile! To participate, visit https://pmppals.net/pals-support-programs/
While we support individuals regardless of where they are on their journey with this rare cancer, we also know that new patients especially face an avalanche of complex information. I hear too many patients say – “I wish I’d found this group sooner.” So, we still have work to do.
PMP Pals is strengthening its outreach initiatives to connect with new patients as early as possible. One way is to reach patients through their physicians’ offices. We will be expanding our efforts to get information about PMP Pals to offices that want to share our mission and contact information with their patients and caregivers.
As technology and medical advances continue to change our lives, we know that individual connections and peer support remain a steady, important part of the rare cancer journey. PMP Pals will continue its long history of helping thousands of individuals connect and share support.
As for me, though it took more than a decade for my path to merge with PMP Pals, this network of peers has been a large part of my life for the last two decades. That’s the Power of Pals!
Charmaine is the Treasurer and Secretary on the Board of Directors at PMP Pals
