Appendix Cancer / PMP Research Foundation

PMP Pals Conference

October 9, 2016

What do we do?

ACPMP is dedicated to1) funding research to find a cure for PMP,

Appendix Cancer, and related Peritoneal Surface Malignancies (PSMs), and

2) funding educational programs to educate physicians and patients about these diseases.

Who are we?

We’re just like you – patients and caregivers affected by appendix cancer, PMP, and peritoneal surface malignancies

Formed in 2008 under the name Pseudomyxoma Peritonei Research Foundation (PMPRF)

501(c)3 charitable organization based in the US but with the goal of a global reach

Renamed ACPMP in 2016 to recognize the importance of appendix cancer in public and patient perception

Formation and goals

Lisa Kurtz Luciano – founder and PMP patiento Diagnosed in October 2007 o Started ACPMP in July 2008o Passed away in October 2012

Saw that there was little govt. funding and no organization dedicated to objectively funding the most promising PMP and appendix cancer research

Set a goal to raise $1 million to fund related research within 5 years

Created a sense of selflessness, action, urgency and importance of the work

Building the team

Shared Experience

It takes a big team

Board of Directors: o Jerry Lewandowski, President – PMP survivor (diagnosed 2007)o Susan Ortega, Secretary – survivor (2009)o Dan Luciano – caregiver & spouse (Lisa Luciano)o Judy Culbertson – caregiver & spouse (Dutch Culbertson)o James Carroll – caregiver & friend (Dutch Culbertson)o Therese Surges – caregiver & spouse (Keith Surges)o John Ziss, Treasurer – caregiver & nephew (Lisa Luciano)

Volunteers: o Office support, legal advice, fundraisers, graphic design,

accounting/tax preparation, etc.

It takes a big team

Medical Advisory Board: o Steven Ahrendt, MD, FACS

University of Pittsburgh Medical Center, Pittsburgh, PASurgical Oncology

o Laura Lambert, MD, FACSUMass Memorial Medical Center, Worcester, MASurgical Oncology

o Andrew Lowy, MD, FACSUniversity of California, San Diego Moores Cancer Center, San Diego, CASurgical Oncology

o Armando Sardi, MD, FACSMercy Medical Center, Baltimore, MDSurgical Oncology

o Konstantinos Votanopoulos, MD, PhD, FACSWake Forest University, Winston-Salem, NCSurgical Oncology

What is getting done?

Research

FundraisingEducation

Research approach

Seek out objectively worthwhile research using a rigorous RFP submission and review processo ACPMP partners with the United States National

Organization for Rare Disorders to issue RFPs and review RFP responses

Focus on basic science, foundational medical research that could be used to support more robust studies, phased trials, etc.o Studies that focus on tumor biology, genetic

profiling, translational studies, immunotherapy, etc.

Use 2 year / $50,000 grants to diversify options and spur progress

Research funded: 18 grants$850K awarded + $100K pending in 2016)

- Drexel Medical School, PA- University of Maryland, MD- Creighton, NE (x3)- UC San Diego, CA (x2)- Wake Forest School of Medicine,

NC- University of Pittsburgh, PA (x2)- Mayo Clinic, Rochester, MN

- Oslo University Hospital, Oslo, Norway

- National Cancer Institute, Milan, Italy

- The Christie NHS Foundation Trust, UK (x2)

- Basingstoke NHS Foundation Trust, UK

- National Institute of Health and Medical Research, Paris, France

- National Cancer Center Research Institute, Tokyo, Japan

Published research log

Log of important research published from 2004 through present: o https://acpmp.org/published-research

Research funded at least in part by ACPMP grantso DNA / genomic studies looking at gene mutations,

prognostic molecular subtypes, overall genetic profiling of PMP

o Studies re: targeting mucin production and limiting mucin production as a therapeutic goal

o Mouse model studies related to the efficacy of therapeutic strategies and anti-angiogenic therapies (i.e., drugs that limit blood vessel formation)

Key Educational Events

Patient and Physician centered symposia around the USo Annual UMass Patient & Practitioner Symposium (Worcester, MA)o Midwest Symposium 2015 \ The Edward Hospital (Naperville, IL)o West Coast Symposium 2015 \ UC San Diego (San Diego, CA)o East Coast Symposium 2015 \ Drexel University College of

Medicine (Philadelphia, PA)o Annual Mid-Atlantic Working Group Practitioner Meeting (UMD,

Mercy Medical Center Baltimore, Sentara Virginia Beach, VA)o Annual UPMC-led Regional Therapies Conference o Bi-ennial International Congress on Peritoneal Surface

Malignancies, by the Peritoneal Surface Oncology Group International (PSOGI)

o 10th biennial meeting this November in Washington, DC

Fundraising

Diversified efforts from patients and caregivers

All manner of local events o awareness walks, runso pub crawls, basketball gameso sponsored marathons, triathlons, ultra-marathonso t-shirt sales, school fundraisers, work jeans dayo casino nights

Memorial donations / remembrances

Collaboration is the key

Patients & Caregivers

• PMP Pals• ACPMP• Appendix Cancer

Connection• Be Unintimidated• Bellybuttons list

serve group• Multiple Facebook

groups

Clinical Centers of Excellence & Training

• UPMC – Regional Therapies Conference & Perfusion Webinars

• Mid-Atlantic Working Group – physician symposia / best practice sessions

• FARGO• PSOGI

Researchers

• FARGO• American Society of

Peritoneal Surface Malignancies (ASPSM)

• Numerous US research centers both at PSM centers and elsewhere

• Global centers –Japan, France, Netherlands, UK, Germany, and others

Questions?