Section Insights
Introduction and Overview of Organizations
What are the roles and histories of PMP PALS and ACPMP Research Foundation?
Jim Carroll introduces the event and the speakers, highlighting the founding of PMP PALS in 1998 as a peer-to-peer support community for appendix cancer and PMP. He also discusses the establishment of ACPMP Research Foundation in 2008, aimed at complementing the support provided by PMP PALS with a focus on research and education.
- PMP PALS is the first global volunteer-run support community for appendix cancer and PMP.
- ACPMP Research Foundation was founded to enhance research and education for patients and caregivers.
- Both organizations aim to provide hope, support, and resources for individuals affected by these rare diseases.
Personal Story and Community Engagement
How can community events raise awareness for PMP and appendix cancer?
Sherry shares her personal journey with PMP and how walking helped her regain strength after her diagnosis. She initiated an annual 5K run/walk to raise awareness and foster community support for those affected by these diseases.
- Personal stories can inspire community initiatives that raise awareness.
- The annual 5K run/walk serves as a reminder that individuals are not alone in their journey.
- Community engagement through events can significantly increase awareness of rare diseases.
International Patient Manifesto
What are the key demands from patients regarding their care?
The international patient manifesto, developed collaboratively, highlights six key topics that patients and their families want healthcare providers to address, emphasizing the need for global awareness and education about rare conditions like appendix cancer.
- Patients seek greater awareness and education about their conditions among healthcare providers.
- The manifesto reflects the voices of patients, aiming to improve their care experience.
- Understanding patient perspectives is crucial for healthcare providers to deliver effective treatment.
Advancements in Treatment Guidelines
What is the significance of the new NCCN guidelines for appendix cancer?
The National Comprehensive Cancer Network (NCCN) has released dedicated guidelines for appendix cancer, marking a significant step in recognizing the disease as distinct from colorectal cancer. This change is expected to improve diagnosis and treatment for patients.
- The new NCCN guidelines provide specific recommendations for appendix cancer treatment.
- This recognition helps ensure patients receive appropriate care tailored to their unique condition.
- Improved guidelines can enhance insurance coverage and access to treatment for patients.
Targeted Therapy and Genetic Testing
Why is genetic testing important for patients with appendix cancer?
Recent studies indicate that tumors may have actionable mutations, and patients should inquire about genetic testing post-surgery. Identifying these mutations can lead to targeted therapies that significantly reduce tumor size.
- Genetic testing can reveal actionable mutations that inform treatment options.
- Targeted therapies may offer significant benefits for patients with specific mutations.
- Patients should actively engage with their healthcare providers about genetic profiling of their tumors.
Standardization in Pathology Reporting
What advancements have been made in pathology for appendix cancer?
The first internationally agreed-upon evidence-based pathology dataset for appendix cancer has been established, aiming to standardize reporting and improve diagnosis and patient outcomes globally.
- Standardized pathology reporting is crucial for accurate diagnosis and treatment planning.
- The new dataset addresses gaps in appendix cancer care and promotes scientific consensus.
- Collaboration among organizations enhances education and awareness efforts for patients and physicians.
Transcript
0:00 Welcome everyone. My name is Jim Carroll. I'm the president of the board of ACPMP Research Foundation and it's certainly an honor and a privilege to co-host today's presentation of the state of the union at Toast to Hope. I want to welcome all the participants today and do the initial introductions. we've got a great speaker lineup both live and on video and we've got a broad range of exciting topics to cover with everyone today. I want to start with Dr. Jula Veraong from UC San Diego Health. He is also the chair of PMP PAL's medical advisory board. We also have Dr. Laura Lambert of NYU Langon Health and Dr. Lambert is the chair of the ACPMP medical advisory board and my co-partner in crime Adele Jason who is the president of PMP PAL. So Adele, I'll turn it over to you at this point.
1:03 >> Hey, thank you Jim. Welcome everybody. And so we'll jump right in. we we'll start out really by by just giving an overview of PMP PALS and ACPMP Research Foundation shared history of hope, support, and progress. PMP PALS was founded in 1998 and is the world's first global volunteerrun peer-to-peer support community for appendix cancer and PMP.
1:40 PMP PALS provides a place where individuals facing these rare diseases can find connection with others who understand their journey, hope, encouragement, and emotional support and shared experiences, resources, and information. Now, Jim's going to talk a little bit about ACPMP Research Foundation's history. >> Yes, we were founded in 2008. At the time, PMT Pal was doing outstanding patient support and we were founded by a community of patients, caregivers and advocates that were affected by appendix cancer and PMP.
2:18 The founders at the time recognized that there was a opportunity to complement PAL's mission and we were created to focus on research, education and awareness with three priorities to fund innovative research to improve treatments and outcomes. to educate educating patients, caregivers, and health care professionals and increasing awareness of these rare cancers and the need for specialized care. Back to you, Adele.
2:51 >> Thank you, Jim. Okay, before I jump into an overview of our programs, I just want to remind everybody why why we're here today. So August starts appendix cancer awareness month and we are here collectively to to raise a glass to the strength, resilience and courage of our patient and caregiver community and the dedication, compassion and brilliance of our surgical and medical specialists and and our scientists that that support us every step of the way. we're here to recognize progress. amplify awareness celebrate one another and look toward a hopeful future.
3:43 as we've discussed on the previous slide, our two organizations have worked together collaboratively you know through the years to provide information support and information research fund research for for this space. So I'll start out by talking a little bit about PMP pals and hopefully all of you in the audience are are aware of us and have connected with us. we often say the physical journey is difficult but so is the emotional journey and and that's what we do.
4:22 Oops. want to so our pals as I mentioned was founded in 1998 by our founder Gabri Gabriella Graham. She saw the need for information and support for patients seeking treatment for this rare disease. she established pals with volunteers worldwide, created a network of patients and caregivers and made mentoring connections. She also established a line of communication with a specialist. And here we are today, 30 years later, doing the same work.
4:59 we're totally volunteerrun at PALS. we have a board of directors. myself, I'm the president. hopefully you recognize the the the rest of our group. Charmaine's our treasurer and secretary. Mark McMahon, one of our directors. Lindseay Bar a newly appointed director and Mike Weber Jr. We also have our PALS medical advisory board led by Dr. Jula Verupang Dr.
5:31 Rebecca Viatric Dr. Jeremiah Deniv Dr. Melanie Angen and Dr. Harship Mogul all provide support to us. About us, you know, as I mentioned, we're the first global community of volunteer-led peer-to-peer support for those affected by appendix cancer and PMP. You know, we're dedicated to this rare disease. We're built on shared experience. So everything we do is grounded in real patient and caregiver journeys, fostering genuine connection, community, and trusted information. And we're here day in and day out. We are here to navigate this journey together at at every step with resilience, clarity, and compassionate support.
6:22 as you'll hear us say many times on today's presentation, no one faces this journey alone. Our mission and vision. Our mission is to build emotional resilience through peer support, shared experience, and trusted resources. And our vision is a world where every patient and caregiver is supported with connection, knowledge, and hope at every stage of their journey. What guides our work? Trust as a foundation. You know, we we show up consistently and reliably for every person who reaches out for support. Our support is journeybased and everyone is at a different stage and in their journey and we're here to meet everyone during their unique experience and path.
7:08 we provide hope through connection. We create meaningful human centers centered relationships that bring light to the journey. we're providing accurate, clear, and responsible information patients and caregivers can trust. And we're intentional. We we focus on what matters most as we walk side by side with our patient and caregiver community. we have th three legs if you will in how we support patients and caregivers.
7:43 You know that the first is is that connection that pure connection and guided support. Then we have areas of comfort tangible care and emotional encouragement. and then ways to contribute. It's oftentimes you know I'm a patient myself and it has been very healing through the years to continue to give back and support our patient community. First program or the first leg is our peer connection and guided support.
8:18 hopefully most of you on the call have participated in our twice weekly hope zoom calls. These are regular group support calls twice a week. we hold these Wednesday evenings at 6:00 p.m. Eastern and Saturday mornings at 11:00 a.m. Eastern. And we're there to share information, go around the room, share experiences, and talk about living life at at all different phases of our journey. we also regularly have specialist guests that that present on a variety of topics and and are happy to support us and answer questions we may have. We also have one-on-one peer mentoring where we match connections based upon shared experience.
9:06 we have in-person patient meetups. we hold these annually and we have one coming up and and the next slide is about our our upcoming meetup. And we also have a variety of online community and digital resources that that you we hope you will connect with us. I mentioned the meetup last year, last October, we had our inpatient meetup in Charlotte, North Carolina. This year we are having it in the Chicago area, Chicago Rosemont just outside of O'Hare airport. And this is a great opportunity for patients, survivors, and caregivers from across the community to gather face-toface. We've gotten to know each other on the HOPE Zoom calls through our Facebook connections, our email connections, our newsletter signups, but there's nothing like seeing everybody face to face. we provide peer conversations and educational sessions. Chicago should be convenient and and we hope you'll follow this link and sign up for our meetup.
10:16 we also have tangible care and emotional encouragement programs that we do. personalized cards. We we have a team of card writers that send cards to patients and caregivers during critical moments in in their journey. This was something our founder Gabriella did back when she founded PALS in 1998 and we continue this practice today. We also send bears again just a tangible reminder that that you're not you're not alone and also a program that Gabriella was doing. And then most recently, we have Brad's blankets.
10:57 sending blankets that bring warmth and comfort. Something many of us need when we're in the hospital or or at home. And you know, not only does it provide tangible comfort, but again, it's a reminder that you know, you are not alone. And then our volunteer engagement and impact pathways. we have many opportunities to to give back and as I mentioned we're about peer-to-peer support. So as people continue on with their journey people become mentors and share their experiences with others. we also have structured roles to volunteer in in a variety of different ways and you know those impacted by appendix cancer PMP become part of something larger turning personal experience into collective strength. and next I'm going to play a video that one of our our core volunteers, Connie, who I hope many of you know re recorded about her personal journey and why she is a volunteer with PALS.
12:06 >> Hi everyone. 10 and a half years ago, my husband was diagnosed with appendix cancer. There was very little information available about this rare disease. While searching online for answers, I found PMP Pals. I immediately reached out and they responded. They answered my questions, offered guidance, and more importantly, they were there for us every step of the way. Not long after, I knew I wanted to give back and I became a volunteer and mentor. Over the past 10 years, I've had the privilege of supporting patients and caregivers globally. The hope team is always there to listen, share our experiences, and remind every new pal that they are never facing this alone. A full circle moment happened for me last year when I was diagnosed with cancer myself. Once again, the hope pals team stood beside me, offered the same compassion, encouragement, and unwavering support. I am forever grateful to this incredible organization and to the extraordinary volunteers who selflessly give their time, their hearts, and it's truly an honor to be a part of PMP pals where our promise remains true every single day. The hope team is always here for you and no one walks this journey alone. Thank you.
13:35 thank you Connie for for recording that and and for all that you do for for PALS and our patient and caregiver community. you know, here I just have a list and this is just a a short list of the many many many volunteers it takes to to run all of our programs. And hopefully people will recognize their their names on here. you know heartfelt gratitude for all that you do for PALS and this this group of people we are here for you.
14:11 and another example of a volunteer doing something is is our pal Sherry who started a 5K walk run after she went through her surgery and and was recovering and she created it in 2004 to celebrate life beyond PMP. we do have a registration link on here but I will let Sherry tell you her story on the next slide.
14:42 >> In 2021 I was diagnosed with pseudomixoma paritinate PMP a rare form of appendix cancer that affects one in a million persons each year. Walking became the key to rebuilding my strength. So in 2023, I established an annual one ina- million 5K run walk to increase the awareness of these two diseases and to remind those facing PMP and appendix cancer that you are never on this journey alone.
15:16 Thank you, Sherry, for recording that. And and you can see how popular that that 5K runalk is just just with the picture there. and and there's also a virtual option. So, we we hope you will support that as well. next, you know, words just cannot express the the many faces of of the pals. And so, included in this presentation are all the all the many people, connections at at at our meetups, connections and and one-on-one events and and all the the friendships and the relationships that have been formed here.
15:59 So, just wanted to share that with everybody. once a member of the PAL's family, always a member of the PAL's family. And then just just real quick wanted to give some statistics about the p the past 12 months in in review. we've done over 90 Hope Zoom meetings.
16:33 over 1,800 Hope Zoom attendees. 1500 cards written, 70 bears sent, 130 blankets sent. over 400 since the program started a couple of years ago, over 7,000 peer-to-peer moments of support, 14 clinical presentations. We had record attendance at at our meetup in Charlotte. We worked on on the patient manifesto and you'll hear a little bit more about that later in the presentation. But this was a manifesto that was prepared from the patient perspective of as a message to the medical community of the things that are important to to patients and and we collaborated with ACPMP research foundation along with some of the groups in Europe and presented this manifesto at SOGI. we had record participation in in last year's 5K and then we've had these various collaborations with ACPMP in terms of joint webinars like this the the manifesto and supporting each other's events and and one last patient story our our pal Lindsay did the as part of ACPMP's fundraiser did did the race walk in New York and and because there there was branding on it, there there was a patient an appendix scander patient that that noticed it. And so through the connection on her shirt and so through that connection Lindsay was able to get her on some of our hope Zoom calls, direct her to the clinical trial listing on the ACPMP site and and now we've collaborated and supported this person.
18:26 and and again with that as I mentioned we're totally volunteerrun so appreciate and any support you could consider. And next I will turn it over to Dr. Beer Pong and Dr. Lambert for their perspectives. >> Great. thanks Adele and and Jim for hosting this event. It's great to be here. I have been working with the both organizations for a long time and it's just so great to see you coming both organizations coming together and working together and all that you've done for the community of people who are dealing with appendix cancer and pseudomixoma. So thank you. It's it has been an honor and a privilege to get to know you over the past many years actually. so it's great to be here tonight and I know Dr. Verong feels the same way.
19:23 >> Absolutely. >> Great. So we just wanted to get started and and you know talk about some things that are happening in the world of appendix cancer and pseudomixoma and but actually starting really with the basics. I know many of you have probably been on some of the symposia that that we've been involved with and we often start with an overview of appendix cancer and pseudomixoma and you know in case there are people who are who are new to this community.
19:58 just to kind of review, you know, some of the challenges with this particular disease that are unique to it that really define it and make it different from other types of cancers. I think probably I'm actually going to start with number two because I think honestly everybody on this call is aware of that appendix cancers and tumors are extremely rare. you know, we we heard about the one ina million walk and I think that's fantastic. And you know, we've been that number has been quoted for for for many years, as long as I've been helping take care of people with appendix cancer and tumors. but we actually I think it's actually going up. I think we have some data to suggest that. We're going to talk about that a little bit. And that's certainly been my experience. you know when we see the number of of patients that we're seeing and and people that we're trying to help and I'm sure Dr. verong has had the same experience over his career that it just seems like it's it's still very rare but more than one in a million unfortunately and you know the this slide here says roughly 300,000 cases per year I suspect it's even more than that but not enough to make it a common disease and so it's not uncommon for someone to get a diagnosis like this and then to find themselves face to face either with a general surgeon who just took out their appendix who's never seen one before or said, you know, I've seen I saw one of these in residency and not really sure what to do about it or to be referred to a medical oncologist who also really doesn't have any expertise in this. And you I think this this webinar and you the reason you know the re the the reason for existing for PMP PALS and appendix canceroma research foundation is to help people recognize this and to be able to advocate for themselves and get to the resources that they need and get to the experts that they need. So, when you're dealing with an extremely rare cancer like this, you really want to be seen and evaluated at an institution and by someone who's seen a lot of it and really knows is on top of the the current literature and and knows the most recent treatments and can guide you and and offer you the hope that you're seeking. And the other aspect of in addition to being rare, as we all know, appendix cancers come in a wide variety. you see that in number one from the low-grade mucinous neoplasm to the other end of the spectrum where it behaves like an aggressive cancer the signate ring cells the poorly differentiated and the treatment algorithms are so different widely different and and honestly the prognosis is tends to be different but again that's why you want to be seen by somebody who has a lot of experience with this and is going to get you started on the right path right away and and make and and let you know what that path is going to be going forward. And the other aspect of this particular type of cancer is we often don't catch it early, right? So that's number three. Unfortunately, because it's rare, we don't have a screening mechanism for it like we have for the more common cancers where we can screen, nor do we have a great way to screen for it. even if it was more common for example you know for breast cancer we have mimography for colon cancer we have colonoscopy but we really don't have a great way of visualizing the appendix either with a colonoscope or with CT scans and and because of its rarity there's really not a lot of utility in large population screening to try to identify this and again we don't have great screening tools for it and then on top of that it.
23:54 Number four, it spreads differently. Most cancers spread through the lymphatic system or the bloodstream. And while more the more aggressive appendix cancers can do that, the most likely way that it spreads is it breaks out of the appendix because the appendix as as you know is a is a very thinwalled structure and it's very easy for cancer cells to not necessarily to grow through or or crawl through the wall of the appendix but literally just to mechanically break through. And so that's why even the lower grade tumors and cancers can spread in the abdominal cavity even though they're not very aggressive cancers that are spreading through the bloodstream and and getting to other parts of the body. it has its own set of of issues as we know and because of that the staging gets more challenging. So number five, you know, we talk about the different stages of cancer depending on where it's located and where it's spread to.
24:56 And again, commonly most appendix cancers and tumors tend to spread in the abdominal cavity. And so most people would say, "Oh, that's a stage four cancer." And yes, it it is technically, but not all stage four cancers are the same. So a low-grade mucinous neoplasm that has spread into the abdominal cavity can often be treated for cure whereas a higher grade tumor may or may not but there are definitely treatments that can be done. And so that this is all to say it gets very confusing not only for the people who have the tumors or cancers and their family that are trying to help them but also for the the physicians that are trying to help them the pathologists. it makes it very complex sorting all that out. The surgeons who are seeing them really understanding the disease.
25:45 So again, you really want to get to a center that sees a lot of this that offers cyto reductive surgery and hipek and other modalities of treating the partal cavity or the abdominal cavity. And number six, we're still still developing our understanding of this disease. It we're we're going to highlight some studies that have come out recently and some advances that have come based on our our increasing knowledge of the molecular biology of these cancers. You know, we finally admit that it's not colon cancer. like we're recognizing it has its own molecular and genomic signature and there's more and more research being done a lot of it funded by the ACPMP research foundation which has just been incredible and really advanced the field and our understanding of it u but it's hard when you're dealing with a rare cancer that comes in all these different varieties that spreads in a strange way and then to add you know like sort of insult to injury if you will not only is it all this but then one of the mainstay treatments of this disease is a is a rather large surgery that involves the use of intraarinal chemotherapy or chemotherapy that's put directly in the abdominal cavity that's heated up and it can be one of the most daunting treatments that people can face. So you know that that's kind of the background that that we're dealing with here. But we are here today to share with you the progress that's being made again largely based on the support of PMP pals and the ACPMP research foundation and that there is hope and that things are getting better that we are understanding the disease more and we're going to share some of that with you today. So Dr. Verapong next slide please.
27:31 >> Oh wow. You know Dr. Lambert you navigated the this slide so like eloquently. you know, I I I I do want to emphasize that, you know, there's really no two cases. I mean, if I'm looking at, you know, the past, I mean, hundreds, but like even on the past 10 patients that I I've taken care of, none of them are exactly the same. you know it's a you know some people have low grade appendicil some people have high grade some people have you know signate ring cell some people have had you know very minimal surgery you know just removing the some people have had a lot of surgery and so it really I mean I I do really think and and apppropo the we don't really know the denominator and it's probably a little the denominator is probably a little bit you smaller, but you know, you guys are definitely rare and and you navigated the you know, number four so so nicely. it it has a while there are some you know some of the high higher grade cancers do spread to the bloodstream and and lymphatic system.
28:39 This is we're mainly here for for how my analogy I give in the in in the clinic is like imagine your appendix like a little water balloon on a faucet and it just kind of grows grows grows until it it pops and and it's just amazing that even though the appendix is part of the colon it's totally different >> completely different. >> Exactly. Yeah. >> Yeah. Let's see if I can forward the slides. Let's see. I'm doing it.
29:10 Okay. I think I double clicked. Okay. >> Yeah. Right. >> Okay. >> Yeah. So, so I want we wanted to take a few minutes to talk about the international patient manifesto that Adele mentioned that again was a collaborative effort between ACPMP research foundation and PMP pals and really looked to you the patients and and your families for what it is you know the person and the family who is facing a rare unique condition like this. what are you asking for? What do you want? And these were the six topics that came up about what what was wanted. And I think this is hugely helpful for physicians and other healthcare providers to understand. we are not in your shoes.
30:03 We want to do everything that we can to help, but we really value your perspective. So thank you to everybody who participated in this and Dr. Vera Pong and I and Adele and Jim we did a webinar around the manifesto a little earlier this year and it was just great to see what came out of it. So so first what what what everybody is asking for is global awareness and education really making parinal malignancies of which appendix is one of the most leading one visible especially to general practitioners and I would add general surgeons and gynec and gynecologists you know as well they're the folks that are finding these and or are meeting people for the first time when they're coming in with symptoms getting it on their radar so they do the proper workup and get people diagnosed as early as possible.
30:56 We all have heard unfortunately stories of people who thought they were just gaining weight or getting older you know it just something they they had to change their diet only to find out that it was something going on with the appendix. so again leading to number two early and accurate diagnosis. So really again this is about creating standardized pathways with clear guidance to get you know the the imaging that is needed the studies that are needed and educating radiologists so that they know what to look for so it's on their radar as well. Again these rarer conditions don't necessarily come to the four when somebody's looking at a CT scan or ultrasound or an MRI. and we're hoping with ACPMP to actually do some education at a large national radiology meeting this year again just to increase that awareness and then timely multid-disciplinary expert care and the hope that every patient reaches a center of excellence offering cy reduction and high regardless of geography and income and I think you know the good news is that compared to what it was like when I started doing this many years ago I'm not going to say how many but that there are so many more centers available that really are centers of excellence. we've created a whole generation of surgical oncologists that are coming up that are eager to be a part of this that are getting this training in their fellowships that are just really dedicated. So the future is bright.
32:32 There are a lot of people who are excited about you know conquering this disease, understanding it and treating it better. equitably in clinical trial access. So a centralized transparent registry so patients and doctors can find relevant trials anywhere. Again, this is part of the mission of the ACPMP research foundation and PMP pals getting people to the information that they need promoting research and innovation. There's no question if you look over the past few years at the number of publications in the literature around this disease it has only steadily increased and there's no question again that with the funding and support of these organizations that that is continuing to improve and then and then finally looking at psychosocial support and quality of life this should not be an afterthought and I know this has been a huge focus of PMP pals and the the hope Zoom meetings and the the meetups and all of that and even at the national and international meetings that that that they've been at really talking and focusing on quality of life, getting people to the support that they need, the resources outside of the medical oncologist, the surgical oncologists, but you know, the therapists and the psychologists and and the support that people need. So, I just think this manifesto is amazing.
34:00 we I want to let people know that we hear you. that we also are focused on on bringing these things just just continuing to improve all these aspects of care. Dr. Verupon. >> Yeah, it's you know the thing that I I I find amazing about the patient manifesto is that I mean it may sound obvious but it's from all of y'all. It's all is from the patients and and you guys were able to rally up resources, rally up different networks from different continents, if you will, and and come up with a a patient manifesto. It's it's it's just pretty amazing and everything about it is is not only self-explanatory, but absolutely right.
34:49 >> Okay. Well, you know, before we get into some of the discussion about updates in terms of registries and and some of the science, I for those of you who have been on the hope zoom, you know that you know I'm a big believer in prehabilitation as Dr. Lambert is as as many of my colleagues. and really it's about you know optimizing you as a patient before as a whole patient before surgery not just optimizing all the medical you know the the medical therapy up to the point of surgery. So there are four main pillars I would say in terms of rehabilitation. one is exercise conditioning. we did wrap up I I had a very small pilot study that leveraged our integrative medicine group here in in looking at exercise psychosocial readiness and and integrative nutrition. And we're, you know, about to look at some of our data, but but really you know, prehabilitation before surgery, which involves a huge stressor is is about getting your physiologic, reserve up, like preparing for a marathon. That's that's kind of like the easiest analogy that I can relate to.
36:18 maybe not anymore with my knee but you know I can relate to in terms of like preparing for this type of surgery because it can be whether it's a you know removing you know just the the tumor or the or removing a whole bunch of organs it's it's a huge stress. So exercise conditioning is is is very important. in terms of bullet point number two nutrition is very important and and we advocate high biologic value protein and then if if possible you know examine your your hemoglobin status and and do the correction if needed before surgery. the thing that we are are proud of is that many of our patients go through a a wellness coach, a mental wellness coach to help with anxiety and stress reduction before the time of surgery. And then the fourth one is kind of the the nuts and bolts of of what we typically would think about prehabilitation is medical optimization in terms of glycemic control, smoking sensation. with all of these happening at least four weeks, ideally four weeks before you can kind of make a impact on your physiologic reserve.
37:40 and there was a highlighted up here is a a study from Morocco that that had a very low intervention. I think actually like a I think it was a 90-day prehabilitation where they could they focus on nutrition and focused on anemia and they found that there were fewer 80 82% fewer pulmonary complications in the prehab group. anything anybody else?
38:12 >> I just think this is a great topic and so important because you know people I'm sure you have the same thing. People always ask me what can I do before my surgery and you know these are thing and you know when somebody gets a diagnosis like this they feel like they've lost all control you know that this alien has taken over and and their life is out of their control. So, it's great to be able to offer people very concrete things that they can do to help optimize their outcome from their surgery and and their recovery in particular so they can get back to doing the things they want to do and back into life as quickly as possible. So, I go through all of these exactly like you talked about Dr. Baron.
38:55 >> Awesome. And then if if prehab is what happens before surgery, enhanced recovery is is what happens kind of right before surgery, through surgery, and then through the whole process once surgery starts. again, there are several main pillars of enhanced recovery. And enhanced recovery really is is about taking evidence-based and multimodality multimodal and multiddisiplinary protocols to kind of standardize your pathway. keeping in mind that again no single pathway is is is similar but I think we can standardize a lot of the elements of it. one of the pillars and and I welcome Dr. Lambert to talk about her studies in terms of a goal- directed fluid therapy is indiv individualizing fluid management in the operating room. many of your cases are can be anywhere from 6 hours to sometimes 12 hours to maybe a little bit longer and it's it's an easy thing to give fluids.
40:02 however the post-operative repercussion is that you know your body is ademinus your bowels are ademinus and then you have a post-operative alias. So goal- directed fluid therapy hopefully ideally gives the right amount of fluids in the you know interoperative period. one of the second pillars is a multimodal opioid sparing approach and actually this is another topic that Dr. Lambert can talk about because we are you know incidentally we're both on the enhanced recovery working group u for seductive surgery and and hipek and you know it for multimodal opioid sparing pain control you know it's it's about giving other adjuncts some we've given gabapentin or although I think gabapentin for for me has fallen a little bit out of favor. celoxib Tylenol and things like that and local anesthesia which I'm Dr. Lambert can talk about. She's you know we in in our kind of our our pre- discussion of the the webinar she has she has good data and she has talked about how she has shied away from epidurals. Now the third pillar is early mobilization and early feeding. keeping in mind that, you know, some of these things are are very difficult, especially after cyto reductive surgery and hipback, especially if you're going to the intensive care unit. It's hard to mobilize. and of course, if you have a lot of ball bowel work done, it's it's hard to to resume a diet early, but but these two elements get you jump started and and get you to recover sooner.
41:53 in terms of the evidence, when an enhanced recovery pathway is utilized, typically there's fewer pulmonary complications. there's a shorter ICU stay. And then >> a lot of studies look at decreased morbidity and and mortality. >> Dr. Yeah, you can fully comment the first two. You're like the expert. >> Well, thank you. I think maybe just what I would say that what I I think the real benefit of these enhanced recovery after surgery programs is they really get surgeons to start thinking about how they're managing patients and what they can do to make things better.
42:40 Otherwise, you kind of do what you've always done or what how you were trained and and you know with the advent of this approach where experts were coming together reviewing the evidence and trying to figure out what could really help lower complications I think we have seen the impact of that and you know as you and I were saying there are some things we agree with with the pathway and some that don't and but it it's still making us think about it right like and it's making forcing us to have a reason why am I doing it this way right so with the goal directed therapy like you said we did a study looking at limiting the IV fluids that somebody got in the operating room within reason like they they need fluids they need fluids actually decrease their risk of a major complication significantly so you know so that makes sense with the sparing of the opioids other things that you can use you mentioned some we use a regional anesthesia approach around the incision that has obiated the need for the epidural and and has actually significantly decreased increase the amount of opioids that patients need during the whole course of their recovery. So, but these things are I think these things are great. I'm glad we're doing them for cyto reduction in HIPPE. as you mentioned, it is evidence-based and yet we're still in the period of generating the evidence.
43:56 So, a lot of it is still based on expert opinion. but again, it forces us to justify what we're doing, why we're doing it, and think about how we can make it better, >> right? And combined with prehab, it's a complete perioperative strategy, not just surgical. >> Yeah. >> Exactly. >> Well, let's zoom out to where the field stands on national guidance. so the for the first time ever, the National Comprehensive Cancer Network has released a dedicated guideline for appendix cancer in 2025.
44:33 and it matters more than it might sound like because this disease used to be folded into colurectal cancer guidance despite being very different. >> mind you there the some of the treatments are still very similar but it's it's a very it it deserves it its category of its own. so what what this means now is that you know the your your medical oncologists or or treating doctors utilize NCCN guidelines. They're they're kind of they're really the most referenced treatment guidelines in in in the US and and in terms of insurance coverage too.
45:17 but it certainly now has given some exposure to appendix cancer which really was grouped in with neurendocrine tumors previously. and that's and that's not really appropriate. It also helps people in the community patients who are in the community and and and non-speist doctors who are are treating this. as a patient, you may have encountered many doctors who've never seen this before in their careers. many physicians actually go through their whole careers not having heard or seen what pseudomixoma is. And so, as a patient, as a patient who's advocating for themselves, you may want to ask if your treatment plan reflects the current NCCN guidelines.
46:12 anything from there Dr. Lambert that I missed? >> No, I agree with you. I this is a huge step forward. again, as I said, the appendix is starting to get the respect that it deserves. It is not colon cancer. It is not a neuroendocrine tumor. I you know and I I just think this is huge, right? Like this is a huge accomplishment for for for 2026. It's unfortunate we had to wait this long, but here it is. We're here.
46:38 Yeah. >> that being said, probably the most comprehensive guidelines has come out of the PSM or peritineal surface malignancy consortium which was spearheaded by Dr. Kieran Turaga who's now at Yale and it in 2018 it was a Chicago consensus because he was at the University of Chicago. but he has he has kept it as the PSM consortium consensus and we had an update to the consensus where we have a have had a greater participation of over a 100 clinicians of surgical oncologists, medical oncologists, pathologists who essentially go through all the guidelines line by line And from these from this consensus there was a greater than 90% agreement among the voting physicians there because of the complexity of appendix tumors and cancers. It was done in two parts with part one covering appendix tumor without peritineal spread and part two covering tumors with peritineal spread. And it it highlights all the algorithms from you know treating and some and some recommendations for even surveillance.
48:06 so this you know has become a a parter part of a larger framework that is taking care of that is overseeing the guidelines for peritineal surface malignancies. And and this consensus didn't just focus on appendix. It it it looked at colurectal diffused malignant peritineal misotheloma and it also created guidelines for ball obstruction as well. interestingly, you know, even though it was a, you know, a HIPPAC consensus guideline, not every cancer, needs HIPPAC, you know, certain things like neurendocrine tumor, or GI strromal tumors, for example, were and I don't recall GITOmal tumors were recovered, but >> I don't think they were. Yeah.
48:59 >> Certainly neuroendocrine tumors. Yeah. >> Yeah. I think I would just add that you know this a little bit contrasting with the NCCN guidelines. So while the NCCN guidelines are probably the most referenced, I would agree with you. I think these are for appendix cancer are probably the most relevant or maybe what's the right word? so the difference you know as you mentioned this was a large consortium of people who have a lot of expertise in appendix cancer and tumors right across from surgical oncology, medical oncology, radiology, pathology and they you know these guidelines were generated in 2018 then updated in 2025 and this was this was all people who were experts in the field whereas in the NCCN guidelines the way that works So each hospital that's represented has a designated person for like GI cancer and then they're supposed to go to the people in their institution who are the experts in appendix cancer and kind of get their opinion and put it together. so I just I just wanted to kind of highlight that difference. And if you are meeting if you're new with the newly diagnosed with this and you're advocating for yourself, recommend that whoever's taking care of you look at these guidelines in addition to the NCCN guidelines. They're often they're very similar. they aren't there, you know, there's no major significant differences between them, but this one offers a lot more information because each section has a systematic review of the literature that's more up-to-date and very specific and again totally completed or created by experts across the board in in appendix cancer and tumors.
50:47 >> 100% agree. And so the another advance that we wanted to share with everybody is that there's a group called the international collaboration on cancer reporting or the ICCR that publishes what's called the WH classification of tumors blue book and the sixth edition is coming out soon and this is the first time again that there's ever been an appendix cancer specific data set for pathologists this to report appendix cancer. And this also was created by a group of experts who got together and really spent there's a timeline here that shows you it started in December of 2024. And it's finally just coming out now. So a year and a half later, multiple meetings reviewing what should and shouldn't be in a pathology report and why, looking at the data, looking at the literature, and coming up with a a synoptic report for the pathologist to follow to really help standardize the language and the information that we're getting around appendix cancers and tumors that will help guide the surgical oncologist and the medical oncologist in creating the right treatment plan. And I just also so I want to point out that this committee was chaired by Dr. Joseph Mstragi who was a pathologist at Yale who recently retired was also a member of the ACPMP research foundation medical advisory board as as our leading pathologist and this effort was funded sponsored with funding by the ACPMP research foundation. So I'm really excited about this. this is one area where we've definitely struggled. I know I have as the pathologists have changed the language but we haven't been but but we find out when it comes out in the pathology report and we're trying to figure out like what does this mean? What did it what does this relate to what we used to call it? And it's changed so many times over the last 20 years. Hopefully this is going to be a really solid foundation to get everybody organized in an agreement on how to report the pathology of these tumors.
53:01 And so this we wanted to focus now on a couple of studies. I know we're we're getting to the top of the hour so we'll kind of move through this but you know we mentioned that this is a rare disease but we also mentioned that we think that we know that the incidence of appendix cancer is rising and particularly in young people. So all these things that we're talking about, the manifesto, the research, the standardization, the guidelines, these are all going to be so important as we're seeing more and more of this.
53:32 there are two studies that are mentioned here from 2025. One looked at what a very large population database in the United States called the SEIR database and found that the incidence of appendix adnocarcinoma more than tripled in the 1980 birth cohort and quadrupled in the 1985 birth cohort versus when you compared that to people who were born in 1945 across all hisystologic subtypes. And this was a a study that was also sponsored by the ACPMP research foundation. But then on the other side of the globe in Australia, they also showed a similar seven-fold increase in appendicil adnocarcinoma comparing the birth cohorts 1990 to 1950 with the largest rise in the mucinus adnocarcinoma. So this is you know clearly something has changed. You know people often ask Dr.
54:27 Dr. Ver, I'm sure you get this question like what causes this? to this day, we still don't know. I wish we knew and I wish we could predict who was going to get it because I would love to do a day of, you know, 10, you know, prophylactic appendecttomies and and prevent appendix cancer. That would be a great day in the operating room. unfortunately, we still don't know. there's a lot of theories about it. the diet, microlastics, the microbiome.
54:54 there's all kinds of theories about it, but we just we just don't know yet. So, but you know, we we need to keep making progress as we're seeing that the incidence is rising. So, >> so a couple studies that I want to we wanted to highlight. and again, I know it is at the the the top of the hour. and a couple of authors who are actually on the the board of ACPMP or PMP pals. one is by Sardi who took a look at aggressive tumor subtypes namely high-grade u mucus carcinoma paritini with signate ring cell and goblet cell adnocarcinoma.
55:41 And so I think that this this is kind of a a nice study because we've you know there there have been some studies and some surgeons who kind of draw a line on operability and and the short version is that with appendix cancer there would be a PCI score where some people some surgeons would not operate above I know you guys all know what a PCI score you know from 0 to 39 It's an assessment of how much cancer is in the abdominal cavity. But this is an interesting study where do Dr. already presented this at the the latest advanced cancer therapies in February looking at this subset of patient and for those patients even with a high PCI score who may not have qualified for for you know certain surgeons if he if he was able to get all gross visible disease then patients had twice the survival benefit with a complete cider reduction complete removal of all tumor than if they could So the key take-home point here is that if you're told that you're inoperable, ask about a second opinion at a high volume peritineal malignancy center.
56:58 And and you know neither Dr. Lambert nor I have any egos. If I if if Dr. Lambert I've actually I referred to a couple patients to Dr. Lambert. If patients are better served by whether it's you know surgeon or whether it's fit or whether it's clinical trials we are always happy to refer and you know and this is the analogy that I like to give is you know you you go you take your car and you get three estimates but for your body sometimes you get only one estimate it doesn't make sense.
57:32 >> Yeah. And location too. That's the other big thing, right? I know a lot of you know we are the high high volume centers are spread out across the country. So you know hopefully somebody people can find somebody that is a good fit that they that they really like working with close to home. and we are happy to like I said refer always to to get the right the person to the right to the right place.
57:57 here's a study u from MD Anderson from Chowry and colleagues and includes Dr. Helmick, Dr. JP Shen and this is kind of early you know targeting mutant Kass. So the take-home here is that you know your some of your tumors may have actionable mutations and this was kind of in a a pre-clinical model and and they they worked on organides organoids or you know clumps of tumors and and they utilized several agents and and they found that there was an 80% reduction in these tumors.
58:33 So, the take-home here is that when you've had your surgery, you should ask your your physician, your doctor, your medical encologist or surgeon if your tumor has been tested for any actionable mutations. And then I'd like to round out with a a shout out to Dr. Loey who's also on the ACPMG board about a a mutation called the genass mutation which can occur in appendix tumors palocycib is actually a CK46 inhibitor that's or IBR that's used for breast cancer and interestingly in his lab he found that there was in in in in tumor cells with this mutation. It actually slowed the growth and and he he purposed this on to with a a clinical trial and patients who had this treatment actually had an 80% response whether it's you know an actual response or if it's clinical stability. So he he felt that this was one of the you know first targeted therapy really for this type of rare cancer. So the take-home message here is also just to make sure that your your tumor has been profiled to see if if it's potentially a target for this type of treatment. And the the caveat here is that this here is not standard of care. A lot of patients come up to me and say, "Hey, am I a candidate for palo cycllib?" And and most patients have not exhausted standard of care.
60:27 Okay. Anything else? I want to go off script for a second. I remember when I when I first started, I went to a PMP pals in in Monterey. I think Dr. Lambert was actually the guest speaker. I was super impressed and I and who would have known who would have thought that now we are working together. >> That's great. Well, thanks Dr. Verafong. >> thank you Dr. Ver Pong and thank you Dr. Lambert. It's a pleasure to share with you all some of our history and some of the scope of what we've been doing and where we're going. And it all started with Lisa Curts Luciano, our founder back in 2008 and a small group of patients and caregivers, Mike D'Vorski. And they really formed this 5013 with a pretty simple mission to fund and support research to discover new treatments for appendix cancer with the hope of one day finding a cure and to fund and support educational programs for health care professionals and patients, caregivers and families to keep pace with the evolving science and to increase awareness about this rare cancer. and we've we've held pretty true to that throughout the years.
61:47 all of the work from the beginning until now has been made possible by the generosity of our donors, by the generosity of time and effort from our volunteers and the med medical specialists who have supported us. So we are extremely grateful to all of them. this is our current board. We're I like to think of us as a small and impactful board. and our team. myself, Judy Colbertson, who's been here tremendous 20 years, plus Deb Shelton, who's been instrumental in a lot of different ways in driving many of the programs you're about to hear about. Our newest members, Dustin Royster and Kim Rosam are contributing a great deal. And our our staff member, Margaret, who was instrumental in putting today today's program together. I want to welcome Sha Shannon Alpeter who is the newest member and will be our patient liaison and will be helping us with a lot of the educational aspect as well.
62:55 we've been very fortunate throughout our time to have an outstanding medical advisory board led by Dr. Lambert. all of the people that you see here, it seems like everyone somewhere along the line today was quoted in Laura or Dr. Verong's presentation, but we've got Dr. Loey, Dr. Sardy, Dr. Vatanopoulos, J Paul Shen, and our newest member, Dr. Pi, who we certainly welcome and look forward to the work that he's going to be doing on our board.
63:30 We also have an outstanding scientific advisory board and the scientific advisory board has really been instrumental in guiding us through our grant process in making sure that we are issuing meaningful grants and Dr. Overman and Dr. Vatonopoulos are been on for a long period of time. Their their terms are near end. Dr. Wagner was recently named as our chair and we are in a little bit of a rebuilding process and we are looking forward to great things to come. We've got a lot of good grant programs in the pipeline that I'm going to share with you in a minute.
64:12 This is really a busy slide, but it's it's the extent of what we focus on in four key pillars or areas. funding of research, education and awareness. and I'll just do a couple of quick call outs in education awareness awareness. We're proud of the the CME course with Dr. Madquay that is now out there. I'll touch on touch on a few of these other things on larger slides. The same thing with our patient physician resources and support. You know, we've got slides that are going to get into the patient registry and the clinical trial database and fundraising. We will touch on that as well, but it's the lifeblood of everything that we do.
65:00 And here's really kind of the the key support areas for patients and physicians that again, we've got the new patient guide, global clinical trial repository. We'll touch further on the patient registry, the finest specialist tool and publish re research repository. All of them are currently up to date and are helping patients day in and day out. So I do want to touch. We're very proud of the ACP patient registry. It took a long time for us to put it together and Deb went to great care partnering up with Nord to make sure that we did all the things correct to get this pages patient registry out there. But the registry collects patient and caregiver data to fuel clinical trials and drive breakthroughs for appendix cancer and PMP. Built as a regulatory grade registry, ACPMP has invested significant time and resources to ensure the registry meets high standards for research readiness and it operates under active ongoing institutional review board IRB oversight by independent ethics to protect participants and maintain research integrity. So, it's powered by Nord's I am rare platform, an industry gold standard solution designed to align with FDA's best practice for natural history studies. And you'll you'll hear a little bit about more on that when we get to our video speakers. our global clinical trial repository provides a lay friendly guide to clinical trials explaining their purpose, objectives and phases phases, excuse me. Organizes trials by type, phase, eligibility criteria and key details with links to full trial information. Includes trials targeting specific mutations relevant to appendix cancer such as Krass and other biomarkers.
67:10 It was created in response to the growing number of trials focused on molecular mutations rather than cancer type or origin. It helps patients identify clinical trials worldwide for which appendix cancer patients may currently be eligible. And your best resource is to have your physician work with you on that clinical trial database and determine eligibility. So getting into our grant program, it it really all started with our catalyst research grants and we for many years you know had a kind of a routine of issuing about two of those $50,000 catalyst rec research grants per year.
68:01 and it was intended to support basic scientific clinical or translational research focused on appendix cancer and appendicil PMP. So it was really put out there to start research programs and it and we are always dedicated to appendix cancer research and PMP versus other programs that are out there. We continued to grow the program and even though we've done that for a lot of years, we're very proud that last year we were able to for the first time ever create the changemaker grant and this is intended to support scientific clinical or translational research studies. It's focused on appendix and PMP and with the highest potential to ultimately impact patients or change our knowledge in appendicial cancers to provide answers about this rare disease that'll help to advance treatments for appendical cancer patients. So obviously it notcheses it up the financial commitment. and the first beneficiary of the inaugural changemaker grant was Dr. Michael Footut who you'll be hearing from later as well from Memorial Sloan Kettering.
69:24 we have partnered up with society of surgical oncology overcology over a number of years and always part participate in their act symposium. This year we're very proud that again we were able to fund the 2026 SSO Lisa Curts Luciani clinical investigator award at the $100,000 level. And you know we congratulate Beth Helmick.
69:57 she at MD Anderson was the recipient of that for a novel biirectional therapeutic strategy for appendicil adnocarcinomia carcinoma. Sorry for my pronunciations. And the SSO young investigator award that we funded for years at the $25,000 level went to Jeremy Sher at University of Washington Fred Hutchinson Center and for the evolution of the immune micro environment of appendicil cancer paraton metastasis from tumor seeding to progression and as we've done over the years we also fund 10 $1,000 grants for young researchers that prepare research papers and have an opportunity to present them at this meeting and attend the meeting. So hopefully some of the great researchers of the future we are catching at an early stage and doing some funding to bring into these symposiums.
70:58 We're excited about our plans for 2027. And right now, we made some decisions that we're going to increase the SSO Lisa Curts Luciano clinical investigator award and we're going to go from a 100,000 to 150,000 on that. We are increasing the SSO young investigator award from 25,000 to 50,000. the changemaker research grant. we will fund that again and we will have always a second discretionary look if there are submissions that rank very high through our SAB and we have affordability to finance a second one.
71:43 We will I can tell you that this year we just finished a cycle and we will be announcing in the near future the winner of our of a a change maker another change maker grant for this year. We also in 2012 27 have a minimum of $250,000 research grants planned and again we will look to if if there's u highcoring finalists we'll continue to do that and we also are about to announce two catalyst grants within hopefully the next month that we'll be awarding very soon.
72:27 We also are proud, Laura touched on this and covered it, but we're proud that we were the sponsor of the first internationally agreed upon evidence-based path pathology data set for appendix cancer through the ICR. and it advances standardized pathology reporting to improve diagnosis, research and patient outcomes worldwide and addresses a critical gap in appendix cancer care by establishing science consensus for this complex disease. So these teams did a great job and we look forward to this becoming the standard.
73:10 we also have made a conscious effort with Adele and the PFP PAL's team to try to collaborate as much as possible in offering leading education and awareness programs to ensure that all patients and physicians have access to the latest developments. With that, we already mentioned the patient manifesto podcast that went out in March for August appendix cancer. We've got the state of union today. We've got the amber lightup campaign that is bringing a great deal of awareness and we grow that every year and and you know we're excited about that kicking off and we've got some very good topics that are kicking out in the month of August. We've got educating and improving care inside the new CME course as I said with Dr.
74:03 Madquay is doing a session on 824. Dr. Ang and Dr. Maggie are understanding the new metformin clinical trials that is new. And we've got a conversation about ACPMP's patient registry with Dr. Ward and the data that's to be announced, but you'll be hearing shortly from Dr. Ang and Dr. Ward. we once again scheduled the multi-reional symposium for October 2nd.
74:34 PALS continues to provide hope through their weekly hope zooms, an outstanding program. And we're excited about PMP PAL's patient meetup that's coming in person in Octo October 16th to 18th in Chicago. Again, we've topped 2.5 million with another several hundred,000 in the pipeline for this year. 51 research grants. So, we are trying to impact that area and we are you know excited about our ability to increase not only the amounts of the grants but to get more grants into the hands of of quality researchers.
75:20 there's not enough time to talk about our fundraising today and all of the outstanding volunteers that contribute in many ways from running golf tournaments to bake sales and pub crawls and Facebook fundraisers and we've just got an outstanding network of people that are really stepping up and we credit them for the money that is flowing in that it's allowing us to fund these research programs and education programs.
75:54 please refer to our site to the current programs. We finished up the our annual walk which is now our law largest single fundraising plat program and this year we topped $200,000 in that oneweek event. So we're very proud of that event. The volunteers have just been terrific. They, you know, again, there's not enough time to announce all of them.
76:25 We've got volunteers that are stepping up on the fundraising side, on the education side, helping with research. all of them are giving back. They've joined our community. They're making a difference for our community. And they also have the ability, everyone has the ability, if you want to become a volunteer, to stay informed on a cause that you care about. So, thank you very much to the volunteers. you really make our success happen.
76:57 So, I'm going to turn it over to Adele for some talking points and then back to me. But we just wanted to kind of start to finish up before these videos with just some key points about what our impact has been and is and is continuing to be. So Adele, >> thank thank you Jim. As we wrap up from from the PMP pal perspective, as we look back, we've provided almost 30 years of service to the appendix cancer PMP patient and caregiver community.
77:29 Proud of that. We've done some math here. looking back and and we we measure things in terms of moments of support because you know meeting patients and caregivers throughout the journey is is important and you know over 1 million peer-to-peer patient and caregiver moments of support over three decades. We provide support to patients in in all 50 states, Canada, Mexico, Europe, Australia, and a Asia. And we have three decades of partnership with global specialists treating appendix cancer and PMP.
78:04 >> Thanks, Adele. Great job. we also we've got almost 20 years of trusted service to the appendix cancer PMP patient and caregiver community. I already touched on, but you know, our grant program is continuing to grow and improve and we're also proud of the standards that we set around it that it's independent evaluation and ranking from an SAB team that you know make sure that the the best proposals are evaluated and they are voted on and we're trying to bring the most promising meaningful research we are trying to award for that our meaningful education awareness programs.
78:50 We've got leading specialists like we do today that provide physician and patient targeted webinars and including our multi-reional and we're really reaching thousands of attendees representing 30 plus countries. our light up amber campaign is shedding a lot of light, giving a lot of attention where it no longer had out in the media. So, we're reaching additional patients, we're getting additional focus and we have been growing and attending more national and international medical conferences, getting the word out about us and PALS and the impact that we have and you know, we'll continue to do that. patient registry I covered in de detail. We're very proud of that and want to continue to grow it. and the CL clinical trials database as a tool and the list of specialists, another tool that we are just excited and and and proud to be impacting the community with.
79:59 So now I I would say we have some messages from s some additional speakers from our community and Margaret I'll turn it over to you. >> The ACPMP's clinical trials database is a wonderful resource for patients and providers. Given how rare and challenging these cancers are, having a place to easily access the newest opportunities and advances in research is incredibly valuable. As a physician who is part of a greater community of providers and patient advocates, this is another opportunity to bring us together and help our patients in the best way possible. Especially as a principal investigator of a newly added study, the ACPN's commitment to clinical trials efforts is already connecting our team with patients around the country who may be eligible. It is truly an honor and privilege to work with the ACPMP to care for our patients.
80:51 >> Hello, I'm Dr. Dr. Aaron Ward, chief medical adviser for ACPMP appendix cancer and sudamixoma paritine patient registry. I'm excited to share that the ACPMP patient registry is now live. This IRB approved nor supported registry is built to the highest scientific and ethical standards and serves as a trusted resource to advance research in these rare diseases by collecting patient and family experiences worldwide. We will capture the full disease journey from diagnosis and risk factors to molecular testing, treatment, quality of life and survivorship. This comprehensive data set will help researchers better understand appendicit cancer and sedum paradi improve earlier detection refine treatments and strengthen standards of care. Every patient story contributes to progress.
81:31 We invite you to join us in shaping the future of appendix cancer and psumal research and care. Hello everyone. My name is Mike Foot and I'm a medical oncologist at MSK who treats patients with appendixal cancer in my clinic as well as works in my lab to try and find new treatments for patients with this disease. We know that appendix cancer is a unique and rare cancer and we need help. We need more treatments. It's not enough just to borrow treatments from other types of cancer. There's a lot of unique opportunities that appendix cancer has that are good that we can use to find new types of ways of treating this cancer, but it needs that focus. And importantly, it needs funding. And I wanted to thank you and the ACPMP so much for funding our research through multiple different grant awards. We've been able to start programs that are really dedicated towards appendix cancer. One of these programs takes appendix tumors from the patient metast metastases from the parinal cavity and maps the surface proteins of these tumors to try and make a personalized therapy for that patient that could be used to find a protein target that could for example be paired with an immune-based molecule that we engineer in our lab. And this is a really exciting idea that we've wanted to do for a while but really is made possible because of the ACPMP funding.
82:46 So I just wanted to share this exciting news with you. Hopefully, this is a treatment that we can make available to people in the future and I'm looking forward to sharing this discovery as well as new ideas with you soon. >> Hi, my name is Debbie and I can think of no better way to honor my son Trevor who died from appendix cancer than volunteering with ACPMP to raise awareness of this rare and aggressive cancer. Volunteering has allowed me to turn grief into purpose.
83:16 When people choose to get involved, patient support, family support, and research becomes a light beacon of hope for everyone. As this community continues to grow in helping one another, whether through participating in an event, making a donation, or connecting someone with ACPMP, things begin to change. Through the Trevor Habersstab Foundation, we are honored to support ACPMP because we know we're stronger when organizations work together and become the light to help others find their way.
83:56 Boy, they were some outstanding comments from Dr. Ward, Dr. Foot, Dr. Ang about some new research and Debbie Habstad has been an outstanding volunteer supporting us as well. we obviously went long today hopefully to everyone's benefit and I would say that we had planned a Q&A session and Adele can you help me out here? I the last I looked before I presented there wasn't a lot of Q&A in put into the chat.
84:32 >> Yeah, actually Jim I I think real time the questions were being answered throughout the presentation. So I think everybody's caught up with the questions in in the Q&A. >> Okay, >> great. So I would just open it up to see if any of our fine speakers are have any kind of closing comments. Well, this is just amazing that you've brought us together. I mean, this is kind of like an ACPMP pals webinar, if you will.
85:06 Maybe one day we can combine your the monikers. and certainly an honor and a privilege always. And if anyone has questions after the webinar, please feel free to, you know, I'm I'm always welcome to to answer any questions beyond the webinar. >> Great. And I would just echo what I said at the beginning. It's it's been an honor and a privilege to work with both organizations over the years. And you know it's when I meet somebody who's who's just diagnosed, one of the first things I do is make sure that they have your website so they can get to the support that they need and get the education that they need. And I tell you know I tell people there there are two two websites that I consider safe on the internet. So and and it's PMP pals and ACPMP research foundation. So thank you guys for all that you've done in this field and advance the field, we would not be where we are without all the efforts that you guys have made. So thank you.
86:10 >> Thank you. >> Thank you. >> I'll just say that to kick off appendix cancer month, this was so special and you know heartfelt thanks from pals to to Jim, Dr. Lambert, Dr. beer pong for us all working together and provide this information to to our patient and caregiver community. Thanks Adele and thanks everyone on the call and those off the call that made this happen today. I I think at the end our patient community that hopefully will have the benefit of either attending today or reviewing it will know that they are not alone and that we are here to help them in a lot of different ways. So thank you very much folks. Take care.
Summary
- PMP PALS, founded in 1998, is a global volunteer-run support community for appendix cancer and PMP patients.
- ACPMP Research Foundation, established in 2008, focuses on funding research, education, and awareness for these rare cancers.
- August is recognized as Appendix Cancer Awareness Month, emphasizing the strength and resilience of patients and caregivers.
- The organizations provide various support programs, including peer mentoring, educational resources, and community events.
- Recent studies indicate a rising incidence of appendix cancer, particularly among younger populations, highlighting the need for increased awareness and research.
- The National Comprehensive Cancer Network (NCCN) has released dedicated guidelines for appendix cancer, improving access to standardized care.
- The ACPMP patient registry and clinical trial database aim to enhance research and treatment options for patients.
- Collaborative efforts between the organizations and medical professionals are crucial for advancing understanding and treatment of these rare cancers.
Questions Answered
What are the roles and histories of PMP PALS and ACPMP Research Foundation?
Jim Carroll introduces the event and the speakers, highlighting the founding of PMP PALS in 1998 as a peer-to-peer support community for appendix cancer and PMP. He also discusses the establishment of ACPMP Research Foundation in 2008, aimed at complementing the support provided by PMP PALS with a focus on research and education.
How can community events raise awareness for PMP and appendix cancer?
Sherry shares her personal journey with PMP and how walking helped her regain strength after her diagnosis. She initiated an annual 5K run/walk to raise awareness and foster community support for those affected by these diseases.
What are the key demands from patients regarding their care?
The international patient manifesto, developed collaboratively, highlights six key topics that patients and their families want healthcare providers to address, emphasizing the need for global awareness and education about rare conditions like appendix cancer.
What is the significance of the new NCCN guidelines for appendix cancer?
The National Comprehensive Cancer Network (NCCN) has released dedicated guidelines for appendix cancer, marking a significant step in recognizing the disease as distinct from colorectal cancer. This change is expected to improve diagnosis and treatment for patients.
Why is genetic testing important for patients with appendix cancer?
Recent studies indicate that tumors may have actionable mutations, and patients should inquire about genetic testing post-surgery. Identifying these mutations can lead to targeted therapies that significantly reduce tumor size.
What advancements have been made in pathology for appendix cancer?
The first internationally agreed-upon evidence-based pathology dataset for appendix cancer has been established, aiming to standardize reporting and improve diagnosis and patient outcomes globally.