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.
As a patient with low grade carcinoma peritonei, they have been a great resource for information.
This is a picture of the virtual walk fundraiser my daughter and I did in June.
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!
The ACPMP is an invaluable resource for both patients and practitioners. I know that when I look for information on their website, I’m getting accurate, quality information that I can trust. A diagnosis of appendix cancer / PMP is unbelievably rare, and having access to reliable resources and information is a lifeline.
This organization is a plethora of information for people with a rare disease. They do an excellent job of supporting patients, families, doctors and researchers. They do wonderful fundraisers to help support desperately needed research. I love the symposiums they have hosted. I dont know where anyone with appendix cancer would be without them.
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
ACPMP is an incredibly dedicated group of individuals, fighting to find a cure for a devastating disease that currently impacts one in a million people, and is severely underfunded because of how rare it is diagnosed. ACPMP helped us to organize a fundraiser in my dad's memory. I had never planned a fundraiser before, but we ended up having over 300 people participate in a bike ride around Lake Champlain in Vermont, and we raised over $65,000. We even got US Olympic Ski Team champions Lindsey Vonn and Mikaela Shriffin involved. I am so grateful to this organization and the people who make it possible--all of whom have been impacted by PMP.
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 was diagnosed with Appendix Cancer in 2017. While receiving my care at the Caner Treatment Center (CTCA),in Newnan, Georgia, I was told about the Website and what type of information is contained. The oncologist at CTCA haven’t seen anything new since the surgery. I have been doing well and I live my life, putting GOD first in everything I do. My name is Sharon McSwain and my age is 55. I live in Helena, Alabama.
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.
Since inception 10 years ago the ACPMP has raised and distributed over $1,000,000 in funds (with full fiscal transparency) to support appendix cancer research. Through their seed grant program, which supports up to three projects annually, frontiers in disease knowledge are being advanced and we are steps closer to developing new tools for disease treatment. Also important, publications associated with these research projects maintain visibility of appendix cancer disease within the medical/research community. We as a community are incredibly fortunate to have the ACPMP leadership to support disease research and awareness.
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 am a volunteer for the Appendix Cancer / Pseudomyxoma Peritonei Research Foundation (ACPMP) and I am so proud of all this organization has accomplished. ACPMP raises funds for research to improve the diagnosis and treatment of appendix cancer and pseudomyxoma peritonei and to sponsor educational programs for patients and physicians. ACPMP has granted over one million dollars in the form of over 20 research grants over the past 10 years that have already led to exciting discoveries that will someday lead to a cure for these diseases. ACPMP sponsors and coordinates educational programs to help educate patients and raise awareness. I highly recommend this organization!
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!
In 2010, my husband was diagnosed with an orphan cancer called appendix cancer/pseudomyxoma peritonei. The ACPMP Research Foundation (ACPMP) is the only non-profit organization raising funds for research to improve the treatment for this rare cancer, by offering research grants administered through the National Organization of Rare Disorders (NORD). To date, ACPMP has funded nearly one million dollars in promising research grants to improve the lives of patients diagnosed with these diseases.
ACPMP is often the first contact a patient or patient advocate will make when diagnosed with this rare disease. They provide current, relevant information to those seeking advice. ACPMP points patients in the direction of specialists who treat the disease, clinical trials, support networks and a number of other clinical/social avenues for them to pursue.
My husband lost his life to this cancer, and this organization gave me a home in which to honor and keep the hope alive for others who, by all accounts, are being diagnosed more frequently in part due to awareness campaigns and education which are a part of ACPMP’s core mission.