Appendix Cancer / Pseudomyxoma Peritonei Research Foundation (ACPMP)

I'm infinitely grateful to the Appendix Cancer / Pseudomyxoma Peritonei Research Foundation, specifically Deborah, for her extremely fast responses as I have sought out appendix cancer specialists.

She immediately reached out to surg oncs on my behalf, expediting what could have been a long process, and giving me hope when I have needed it most.

The organization is a lifeline for people with this rare cancer; its importance cannot be overstated.

I was diagnosed with appendix cancer earlier this year. When you receive any diagnosis you are grateful for any information you can receive to help you further your understanding of your situation. After the diagnosis, I was left with so many questions and a feeling of being adrift. I was learning how rare appendix cancer is and felt that I did not have enough knowledge on it, didn’t know the different types of appendix cancer, what questions to ask my doctor. So I scrolled the internet looking for anything that would help me and luckily I landed on the ACPMP. I was relieved to find the ACPMP had a wealth of information and resources I could utilize to learn more about appendix cancer and the research that is being done to support those diagnosed and survivors. I so appreciated access to information directly from medical doctors who specialize in this cancer, and found their workshops to be extremely useful to my understanding of my case. In all, I felt I landed on an organization who had begun the hard work. You also find community at ACPMP, volunteers who are both survivors and advocates, allies, who care deeply about finding solutions and raising funds for the research necessary to continue fighting for studies and better treatments. You would be hard pressed to find any other organization that focuses solely on appendix cancer, and I think their work has been vital to raise awareness on this rare disease. Thank you, ACPMP for all you have done and continue to do.

I cannot express enough gratitude for the incredible support that the ACPMP has provided to my family during one of the most challenging times in our lives. My wife's recent diagnosis of appendix cancer has been overwhelming in a lot of ways, but the ACPMP has been so instrumental in helping us navigate this difficult journey.

Their compassionate approach and deep understanding of appendix cancer made us feel less isolated in our struggles. The resources they offer, including educational materials, support and connections to other families facing similar challenges have been invaluable to us.

In a time filled with uncertainty, ACPMP has been a beacon of hope for our family. I would wholeheartedly recommend ACPMP as a resource to anyone needing support in navigating an appendix cancer diagnosis.

Thank you ACPMP for everything you do. You are making a profound difference in the lives of families like ours.

I was diagnosed with appendaceal cancer 2 years ago. I have found this nonprofit to be so helpful in learning more about my disease and treatments, etc. I found it to be one of the best resources that I have had.

My husband Tom died of signet ring appendix cancer June 2022, he was diagnosed with this rare cancer by Christmas 2021. He had major surgery to remove his appendix and tumor but the pathology report following the surgery showed he had cancer in his lungs and he had cancer in 24 of his lymph nodes. Tom found this great nonprofit PMP Pals and participated in 2 zoom meetings each week. It helped him so much giving him support and he felt like he knew everyone on the zoom meetings. He stayed on the time frame to start chemo but the cancer spread to his bones, chest, kidneys. I think he could have beat it if it was not signet ring. PMP Pals is a wonderful nonprofit.

This is such an important cause to show awareness and educate the public on identifying symptoms and receiving early diagnosis. Thank you for your role in this regard! AWARENESS AWARENESS AWARENESS to catch it early!!

Deborah helped me connect with Dr. Bartlett! This is a wonderful person, and wonderful Dr. I encourage you to keep them in your prayers. They are truly amazing people. I am so very thankful for their support.

We have a close friend who is struggling with cancer that started at the appendix and now has spread. We walked with her and her husband that day. She is doing phenomenal despite the odds and it's only by Gods grace!
Ty for your hard work

Steve and Erinn Williams

When my brother called me back in September and told me he was diagnosed with Apendix Cancer / PMP, the word shock doesn’t capture how I felt. I knew he had been feeling a bit off recently, having what he thought was digestive issues or food intolerances. When he called me and told me his diagnosis was PMP cancer, everything felt like it stopped for that day. My oldest brother who I grew up with as close to a twin as can be, sharing the news nobody wants to hear. After many hours (and days) of feeling helpless, I decided it was time to see what we were up against, reading as much literature online as possible over the course of many days. Research articles, YouTube testimonials, and of course, the ACPMP foundation. With this disease being so rare, I felt like we were on a bit of an island at first, struggling to find information that was current and relevant and helpful in identifying what we were up against. Even more, I struggled to find any actual stories from actual people and their families who have dealt with this. This is where the ACPMP foundation came in. Not only does their foundation provide a wealth of relevant information, they have stories from the actual people who have dealt with, and beat, this awful disease. They have been an invaluable resource to humanize this, connect with others, and educate ourselves on what the fight will look like. My brothers fiancé has been in daily contact with individuals from the foundation who have helped to guide us in our care search, and also helped to guide us through the surgery and recovery to date. The ACPMP foundation has been a tremendous resource in the fight against this rare disease, and as we look towards my brothers continued recovery, we all plan to find ways to continue being involved and helping to grow this network, so the next person does not have to feel alone, lost, or isolated in the fight.

The team at ACPMP helped me and my husband navigate this rare cancer and find the right specialist in our area. We also participate in the walk each year, and hope to continue to help advocate for others going through this.

I have been fortunate to have found ACPMP by accident. I have PMP and was told surgery was not an option. I ended up at the ACPMP site while looking for trials. I found a list of doctors and a ton of information. One day I decided to call Deborah Shelton regarding a trial, I was desperately trying to get information from anyone willing to talk to me. I had the most wonderful conversation with Deborah, she is so caring and well informed. I felt like I finally found someone who knew what I was dealing with. She suggested getting a second opinion. I did so, which was actually my fourth Dr. I am scheduled for surgery soon. We are traveling from California to Pittsburgh,PA. I did not think was an option.This would not have been possible without discovering ACPMP. I have viewed many, many of their videos posted which have been incredibly informative. In my small efforts I just tell everyone to look up ACPMP and raise awareness. I am incredibly grateful that I stumbled upon this great organization and plan to do what I can to raise awareness once I am on the recovery side. Ever so grateful. Please help keep this in the forefront of non profits to support.

There are no words to express our gratitude to the ACPMP Research Foundation and their team. From the day my husband was diagnosed with this rare cancer and we reached out to them they have been incredible. The research, answers to questions, list of top speciality surgeons, as well as the list of questions to ask medical professionals that they provided us has made the scariest time in our lives a little easier. Deborah has been an absolute godsend. From late night phone calls to early morning texts, she has not only been a part of our journey and an extension of our team, but she has become family. I can’t recommend and thank this Nonprofit enough. I hope anyone diagnosed with this rare cancer finds their way to the ACPMP Research Foundation.

ACPMP was a beacon in a stormy sea when I was diagnosed with this rare condition providing resources, referrals, information and direction. But it might be the encouragement and emotional support that was most important to me as I started on a journey without a known destination. I will be forever grateful

My experience is my husband Tom that died from Signet Ring Appendix Cancer. He was diagnosed after a months of many tests, we knew by Christmas 2021. He was very proactive in fighting, it was the hardest fight of his life. He joined PMP and did the twice weekly zoom meetings. He was always smiling when the meetings ended. Tom would always say some of the people with appendix cancer were going through more than him, but that was not true. He had a very experienced surgeon who trained at UC San Diego for these rare cancers. He had the surgery in mid March, He died shortly after getting the port inserted for chemo. 6-5-22.

I was suddenly diagnosed with Mucinous Adenocarcinoma of the Appendix in June 2022. Like many, I had a history of various vague symptoms until I walked into the emergency room in pain. I immediately started researching appendix cancer in preparation for my first appointment with the oncologist. The Canadian Cancer Society didn't even list it on their database of cancers. Thankfully I discovered the ACPMP website and read everything I found there and joined their Facebook support group. Everyone here wanted to treat it as "colon cancer" but with the information available through ACPMP I was able to push for the level of care that I needed. Without the resources of ACPMP I would have only been offered chemotherapy and would never have known to reach out to the only surgeons performing CRS/HIPEC in British Columbia. The 6 hour drive was worth every minute since the chemotherapy hadn't worked!
Thank you ACPMP!

ACPMP was a light in the dark for us when my spouse was diagnosed with appendix cancer - something none of us had heard of. They had so much helpful information, and we wouldn't have found a specialist without them!

When my husband was diagnosed with AC/PMP we struggled to find a non-profit that focused on such a rare cancer. I value the important work that the ACPMP Research Foundation does to educate the public and advance patient care. My husband passed away in January of 2023 and I hope that in the future there are more treatments and preventative care options! Thank you, ACPMP!!

After a surgery for what the doctor thought as ovarian cancer, I was told it was PMP and called Chris Pjekarski to get a referral. I was sent to Dr. Sardi at Mercy Medical in Baltimore and it saved my life using the HYPEC surgery in 1997. In 2023, I had genetic testing to find out I had HSP(Hereditary Spastic Paraparesis) on the brain motor cortex that controls voluntary Movement in my brain. There is no cure yet and it is progressive. I am continually thankful for the extra years I've had good health from the phone call to the president of this organization 26 years ago.
Mary Grimm mwgrimm@verizon.net

I have appendix cancer and was advised to get in touch with ACPMP. I did and have spoken with Deborah Sheldon several times now. She has been extremely helpful in answering my many questions regarding this disease. Because appendix cancer is so rare, there aren’t many places you can get such caring advice.

I have been diagnosed with appendix cancer and I am undergoing Chemo therapy for 6 months. I found ACPMP online. And within moments I received an email from Debbie a member of the team at ACPMP with encouraging words. I also recently, signed up for the symposium and it was very good. Even from a layman's terms it was very good to listen to the work that is being done.
So grateful.

Found my way to ACPMP 7n 2018 when my spouse was first diagnosed with appendix cancer. One of their volunteers responded to my cry for help immediately, talking me through the diagnosis, disease, and helping me navigate the few experts across the country that treat it. I have been a full-time volunteer myself since then and a Board member. I am so grateful for this organization's focus on funding educational programs and meaningful research to serve as a beaconof hope to others.

Wonderful advocacy and fundraising for an under-funded area of cancer research

Compiles so much useful information for a not very well-known disease. Provides ways to connect, find info on clinical trials, as well as many other helpful resources.

This is such a dedicated group that provides great resources and support for patients, families, and friends!

The foundation does a great job providing resources for medical professionals, patients and their families!

ACPMP was the first organization I discovered after being diagnosed with appendix cancer 4 years ago. I found so much good information and a lot of hope, so needed at the beginning of my cancer journey. This terrific group helps fund important research for rare appendix cancer and continues to be a great source of information and support as I navigate survivorship.

My husband was diagoned with Apppendix Cancer in 2004 and at that time there was no organization dedicated to Appendix Cancer Research, Education or Awareness.
In 2006 after his passing I along with his childhood friend organized an awareness walk and those funds were the first to be allocated to the ACPMP Research Foundation

When faced with a cancer diagnosis of any kind having a community of support is essential but it is particularly important when that diagnosis is rare. Since its inception, ACPMP Research Foundation has fostered its mission to educate and raise awareness for AC/PMP by funding the research that is desperately needed to make a difference for people like me, a now 8 year survivor. What I've found at ACPMP are channels of hope, support, and the expert guidance needed to navigate it all and I couldn't be more grateful.

I have seen the work that this extremely dedicated group of individuals have been doing for this organization since its inception after a dear friend lost his battle with ACPMP at a time when no one really knew what it was. Their tireless efforts have brought It to the attention of many who would otherwise have never heard of it. I applaud them and will continue to support them in the future.

This organization does wonderful work for patients with a rare disease. They raise funds and awareness and connect patients in need. I'm proud to work with them and raise funds for them.

I have been a supporter of this organization since its inception and am passionate about continuing to support its mission. I have watched it grow from its early grass-roots efforts to its current national footprint, with international supporters as well, setting the standard for up-to-date information on treatment options; an advisory panel which specializes in AC/PMP; and 15+ years of experience in fundraising efforts to support the shared goal of raising funds for research, continuing to Make A Difference for all those affected by this diagnosis: patient, caregiver, family or friend. This organization exemplifies the spirit and commitment of the nonprofit community and I am proud to be a part of their very best efforts.

My wife was diagnosed with appendiceal cancer in 2018; an extremely rare disease. We were so fortunate to be directed to the ACPMP website by a friend where we found resources to help us understand this wretched disease, including specialists to seek out for diagnosis, prognosis, and treatment options. Two Board members of ACPMP spoke with me and shared their loved ones journey with appendiceal cancer. And through ACPMP, my wife joined a Facebook group of others diagnosed with appendiceal cancer. All of these connections helped reassure us that we would not be going through this journey all alone.

ACPMP is a significant contributor in the appendix cancer community and has established strong connections with many different appendix cancer stakeholders: patients, caregivers, doctors, scientific researchers and others. I am humbled to be a part of this organization that has been built from the ground up and grown by dedicated individuals affected by the disease. The fruits of those labors is an organization I am proud to work with every day, and I look forward to ACPMP's continued success and evolution.

The ACPMP Research Foundation is an incredible nonprofit that supports critical research, education and awareness for appendix cancer and PMP. Funding research, providing resources and educating the public and medical community. It fills the gap where there is no other organization like it. It's mission makes such a difference for this rare cancer and patient community. I truly believe we will find a cure because of the work that ACPMP is doing.

When my husband was diagnosed with this extremely rare form of cancer, I didn’t know where to turn. Luckily, I found ACPMP Research Foundation and they provided me all the info that I needed! I would be lost without them!

This charity allows me to honor my late father. My biggest hope is that the money and awareness raised will help to find a cure for appendix cancer ASAP.

This group is immensely helpful for people with this rare cancer. Resources, kindness, and information are all widely shared and easily found.

As a patient with appendix cancer, I turn to the ACPMP Research Foundation to find resources. Having an unbelievably rare cancer is difficult. It can be hard to find information you can trust. I know that the ACPMP is too notch and very trustworthy. The resources they provide to patients and doctors are invaluable.

The ACPMP is a steadfast champion of appendix cancer research and patient advocacy. Since 2009 their fundraising efforts have provided 1.2 Million dollars distributed as 27 seed grants to support promising research avenues, and they support educational programs for physicians and patients. The appendix cancer community is incredibly fortunate to have strong founders/leaders of the this top-notch non-profit organization, without which research would have made little progress over the past decade. I am so grateful to their leadership team and the countless volunteers who organize fundraising events. On a personal note, one of the types of treatments supported by a seed grant holds promise to help my husband, hopefully someday, when the treatment is available as a clinical trial (trial is set up, but covid-19 is slowing down implementation).

Through ACPMP research foundation website and facebook group, I learned a lot about trials and new techniques to battle this cancer.
They have clear info, work on development and communication and give hope to anyone who is fighting or caring for a PMP survivor.

I am so thankful that ACPMP exists to help people like my sister!

ACPMP changed my life. They connected me with other survivors of an incredibly rare disease and provided me knowledge about my rare disease that I was not able to find locally, even with an expert in this disease. ACPMP is small but mighty and filled with the most passionate team. Appendiceal cancer survivors are so blessed to have this organization as our disposal!

You have stage IV cancer. How do you even begin to process that? Those were the words that I heard June 2019. The diagnosis of stage IV cancer is tough enough. To hear that you have a rare form - appendix cancer - makes it all the more difficult to find information. And hope.
Because of ACPMP, I am now connected to others like myself, researchers and experts in the field. I am armed with information. Thanks to ACPMP I have found hope.

This is a great organization! I love the events that it hosts. Even in times of the coronavirus, ACPMP still knows how to get people together for a great cause virtually. I will always support the great work of ACPMP!

I am grateful that ACPMP is bringing awareness and funding research to find a cure for Pseudomyxoma Peritonei (PMP), Appendix Cancer, and related Peritoneal Surface Malignancies (PSM),

I was diagnosed with Appendix cancer in 2019. It’s a difficult time for anyone diagnosed with cancer but having a rare cancer diagnosis adds additional challenges as there is far less information known. The depth
And extent of the information I have been able to gather from ACPMP is incredible. From the UK I’ve been able to join zoom meetings and conferences in the USA allowing me to hear from the worlds leaders in the management of this disease. It is a unique and inspirational organisation. One I’m sorry I needed but glad I found.

ACPMP is a fantastic nonprofit working to help research, treat, and hopefully cure appendix cancer and pseudomyxoma peretonei. My father was diagnosed in April of 2013 with this terrible disease and has undergone 3 surgeries since. He is still fighting but I hope to find better treatments and cures one day so other people don't have to deal with this horrific disease.

This is a remarkable organization that reaches out to very specialized patients in need of encouragement, support, and detailed information. They pull together the absolute best experts, clinical trials, resources and provide patients with outstanding support!

Working hard for the rarest of rare cancers where there is no cure, giving patients hope for a future without hope. With only 2000 new cases in the U.S. per year, their ability to raise awareness and money, while focused on communicating the best pathways for care, and all the while, keeping the patient at the center of their action makes this small but mighty charity special.

Because of the detailed information on this website, I am thriving after my CRS-HIPEC surgery in Dec. 2019! My local surgeon had no experience with this cancer or procedure, so his recommendation was to have my ascending colon removed along with the appendix. My local oncologist recommended 3-4 rounds of systemic chemo, then the surgery, then possibly more chemo. By finding Dr. Levine, at Wake Forest, (from the ACPMP website), I did not have to have any chemo before or after the CRS-HIPEC procedure AND I didn’t lose any of my colon! I am soooooo blessed to have found this website and the information I learned before proceeding with the local doctors! The MOST IMPORTANT advice I learned was to see a specialist!! So very thankful that I did!

Help is something we all need when diagnosed with any rare cancer.
The ACPMP Foundation is all that and then some. I am a 15 year survivor and have turned to them for help for myself and recommend them to everyone I meet or come in contact with going through this diagnosis and journey . It helps so many people to get to the right Doctors and Medical Centers that treat this cancer correctly. They make a difference and I’m so glad we as patients have them. Thank you isn’t enough for the dedication they give to so many.
Sincerely, Beth Henderson

The ACPMP Research Foundation is a wonderful charity dedicated to the important goal of researching a disease that can be a confusing diagnosis for its victims. ACPMP has done great work in raising awareness and knowledge around an under-researched form of cancer.

Fantastic job of keeping patients up to date with the most recent research and support!

Integrity - this organization is run right! One of my family members was diagnosed and treated for very rare PMP cancer five years ago. Well, long story short: this group is passionate about doing the right thing for the right reason, with compassion and dedication. Grateful that they adhere to their mission re: appendix cancer and pseudomyxoma peritonei - to educate patients and physicians about these diseases. 5 stars!

I am a PMP 10 year survivor. Not long after I was diagnosed I was introduced to Lisa Luciano who founded this charity. Sadly, unlike me she did not survive, However the legacy she left has saved so many people, including myself. This Non-profit has not only raised awareness so that this cancer is properly diagnosed, they raise funds so that doctors can research this rare disease and try to find therapies to cure it. It is remarkable the progress that has been made in 10 years.

I am so thankful for the comprehensive, high quality information this charity provides on its website. I used their site to understand my diagnosis and figure out what I needed to ask at my initial appointments with doctors. There is no other place to find so much information on this uncommon cancer diagnosis.

My husband was diagnosed with PMP in 2014. It was difficult to find information on this rare cancer until we found ACPMP Research Foundation. Run almost entirely by volunteers, this organization is critical to funding research for Appendix Cancer in its’ various forms.
They receive the majority if their funding from patients and payients families via donations and fundraisers.
Their staff are all friendly and knowledgeable and are quick to respond to inquiries.
They get an A+ from me!

I first became aware of the ACPMP research foundation in 2012 when my husband was diagnosed with appendix cancer. Upon scouring peer-reviewed literature for information it became quickly apparent that this foundation was a leading funder of research for this rare disease. Their grant program has led to improved disease understanding and is generating new avenues for treatment. Moreover, they raise awareness for appendix cancer through travel grants to medical professionals, they attend medical research symposia to stay up-to-date on research progress, and they serve as a conduit to provide this information to patients/caregivers. Their accounting practices are transparent. With having granted over 1 million dollars to ACPMP research programs the work of the ACPMP Research Foundation is an incredible testament to the power of skilled leadership. We the patient/caregiver community are so very grateful for this organization.

I am an appendix cancer survivor and have referred multiple patients to the ACPMP Research Foundation for valuable, trusted information. Since appendix cancer is rare, there are not many resources available and there are many misconceptions about the diagnosis and treatment of this disease. I wish this site was available when I was diagnosed. it would have save me and my family a lot of extra heartache!

I’ve personally been raising funds for ACPMP for several years when my Dad was diagnosed with the disease. ACPMP funds research, awareness, and promotes education. Their financial transparency proves that this is one foundation that people should stand behind.

How did I end up with this rare appendix cancer? How did I, a mother of two girls both under the age of three end up fighting for my life? This I will never understand. What I do understand is that I am grateful for ACPMP! When I felt alone and scared for my life, they supported me in ways that I can not truly thank them enough for! My family and I give the ACPMP much gratitude for all their hard work and support! Please support appendix cancer research and help my new appendix cancer family members find answers linked to this horrible disease ❤️

I was diagnosed with Appendix Cancer/PMP in 2009. After my recovery from CRS and HIPEC in 2010, I wanted to do something to help the AC/PMP community. I was excited to find The ACPMP Research Foundation (PMP Research Foundation back then), which had already awarded three $50,000 research grants after their first year.

After meeting the other volunteers, I knew this was the group I wanted to be part of. I am so proud of what we have accomplished, and honored to serve on the Board and volunteer my time for this amazing nonprofit.

Best stewards of donor dollars that I’ve ever seen ...and I work in the nonprofit sector. They are making great strides funding transformative research for a rare cancer that gets overlooked in academia. Achieving so much more than providing hope to cancer patients with too few options, they are amplifying the need to understand a very complex and misunderstood disease, helping to find new treatment options that prolong life and preserve quality of life. This rare group of dedicated survivors, patients and caregivers are making a difference! As Giving Tuesday draws near, please keep this foundation at the top of your list.

I am an appendix cancer patient. I recognize and appreciate the continued effort of ACPMP in funding important research for this rare disease. They advocate and offer medical conferences to further help patients like me.

Great fund raising events and designation of grant recipients.

Indispensable support and research! So thankful that this exists now and when I was first diagnosed there was little awareness. So thankful for their tireless efforts!

I Have learned so much so Much from this Research foundation since being diagnosed early in January of 2017 with Appendix Cancer.. To say I was literally "Scared to death" is is putting in Mildly'! I had my first surgery Mid January of 2017 and My life Saving Hipec Surgery on July 20, 2017 at the University of Wisconsin Medical Center, Madison in Wisconsin. In between surgeries I was able to go online and find a terrific Appendix Cancer Group and meet Therese and several Others who have had experience in dealing with this Disease.. I am forever grateful to Therese Surges and others who have inspired me to continue my journey and never give up,, This year strong enough to run 5 K Run and Walk for Paul Carbone Cancer Center.. enclosed is a photo of Myself and My daughter shortly after I had my second surgery and was at rehab center.. I hope to help others on thier journey just like this foundation and Therese has been there for me..

This site has been a Godsend for many people. It provides resources, contacts and support to those not only afflicted with the disease, but the caregivers and family members as well. Thank goodness for this organization and the compassionate people behind it. I know they give all. Keep up the good work ACPMP!