ACPMP Research Foundation Newsletter
Spring, 2019
Spring is here!
         April showers bring May flowers and a new ACPMP newsletter! ACPMP is excited to catch you up on what has been going on these last few months and to share new updates and events. Please take a minute to read about what we've been up to and what we have planned.

         We are so grateful for the organizers, volunteers, and supporters of our events, initiatives, and goals. I t's people like you that help us raise awareness across the globe, and are helping fund critical research and education for Appendix Cancer and PMP.

Thank you, from the volunteers and staff at the ACPMP Research Foundation!

What's in this issue...
2018 Impact Report
Patient Empowerment Initiatives
We Moved!
Current & Upcoming Fundraising Events
Past Fundraising Events
Past Educational Events
How to Help
2018 Impact Report
We are committed to financial transparency, we want our donors to know how every dollar they donate is spent.

Our 2018 IRS Form 990 and Reviewed Financial Statements are available for review at our Donor Confidence page, and our 2018 Impact Report shows what we achieved in 2018. We are proud to once again be a Platinum Level Participant on the GuideStar Exchange, demonstrating our commitment to financial transparency. 

Thanks to all our amazing supporters, we couldn't do it without you!

Patient Empowerment Initiatives

ACPMP believes in the power of patients to drive research and innovation and effect change. These new patient-driven programs empower patients to participate in research and advocate for their care. This initiative includes the following new programs:

New Patient Guide a guide for new patients providing information on appendix cancer and pseudomyxoma peritonei along with quick links to patient resources.

Clinical Trials Guide a patient-friendly explanation and links to active clinical trials currently recruiting appendix cancer and/or PMP patients.

Excess Tissue Donation: ACPMP has partnered with to allow patients to direct their excess cancer tissue samples to research projects. Initially, samples donated via will be sent to the Broad Institute of MIT and Harvard, where the samples will be used to attempt to develop research models. Visit
to learn more about this project.

Patient Registry: ACPMP is exited to announce the creation of the ACPMP Appendix Cancer Pseudomyxoma Peritonei Patient Registry, a collaborative effort between ACPMP Research Foundation and the National Organization for Rare Disorders (NORD) to study Appendix Cancer and Pseudomyxoma Peritonei.  The ACPMP Patient Registry is under development and expected to launch in the Fall of 2019; please contact us at  if you are interested in assisting with the development of the registry.  



We recently underwent a big transition and have since moved our main headquarters to Washington, D.C.! We also have a new phone number! Please note that any mail or phone calls sent to our Ohio office will still be forwarded to us. 

ACPMP Research Foundation 
2021 L Street NW
Suite 101-244
Washington, DC 20036-4909

Telephone number:  (833) 227-6773 / (833-ACPMPRF)

Congratulations To Our 2018 Grant Recipients!
ACPMP is honored to announce the following $50,000 research grant recipients:

Principal Investigator:  Konstantinos Votanopoulos, MD, PhD
Institution: Wake Forest University, Winston-Salem, NC, USA
Project Title: Immune System Enhanced Appendiceal Cancer Organoids for Ex Vivo Determination of Immunotherapy Efficacy in Appendiceal Cancer

This grant is issued in memory of Barrett Peterson, Roger Graham, and Aly Kendall-Jobe

Principal Investigator:  Shyh-Dar Li, PhD
Institution:  University of British Columbia, Vancouver, BC Canada
Project Title: Modulation of Tumor Immune Microenvironment for Enhanced Therapy of Pseudomyxoma Peritonei

This grant is issued in memory of Joyce Davitz, Paula Druse, Neil Elkins, Robert FitzGerald, Marcia Fosburg, William Howard, Francine Lane, Doug Lawler, Christina Nuzik, Geoff Pierce, Stanley Pollack, Ronnie Rabon, Laura Rinier, E. Annette Sauer, and Yvonne Stevens

Both grants were issued in memory of friends we lost to PMP or Appendix Cancer. These donations remind us of our great responsibility to put these funds to the highest and best use po ssible, a responsibility that we take very seriously.  Thank you as always to our dedicated fundraisers, to the many researchers who applied, and to our supporters- you are our inspiration.

Research Grants RFP Available!

The ACPMP Research Foundation will fund two $50,000, two-year grants in 2019 for scientific and/or clinical research studies of appendix cancer and pseudomyxoma peritonei. The RFP for this funding is available now, and initial proposals are due on June 18, 2019. 
  • Abstract deadline: June 18, 2019
  • Full proposal invitations: August 2019
  • Full proposal deadline: October 2019
  • Award announcements: December 2019
The ACPMP Grant Program is currently administered by the highly respected  National Organization for Rare Disorders (NORD).

Grant recipients are selected by the independent  NORD Medical Advisory Committee.
Information and the  application form for the ACPMP Research Grants  are available on the  ACPMP website  or on the NORD website at their  Request for Proposals page.

Questions or requests for application forms may be directed to NORD at:
(800)-999-NORD or
Current and Upcoming Fundraising Events
13th Annual PMP/Appendix Cancer Walk & Dad's Day 5K 

Save The Date for our Father's Day Walk and Dad's Day 5k event this year on  Saturday, June 15th  at the scenic Ridley Creek State Park just outside of Philadelphia. 

To register, create a team, or donate go to: ACPMP 5K Walk/Run

This event is held annually in memory of Dutch Culbertson, beloved father, husband and friend  and has raised well over $350,000 for AC/PMP research and education over the past 12 years!

Can't Make It To Philly? Do A Virtual Walk!
ACPMP proudly presents our Virtual 5K for all those who cannot attend our PMP/Appendix Cancer Walk in Philadelphia!  All online and all on your own schedule! A super easy & fun way to help raise funds for ACPMP! Click here to register as a Virtual Walker .

Forever Flowers by Carol
Carol Koch has found inspiration by creating "Forever Flowers" as a way to not only bring light to people's lives, but by donating 100% of the profits to ACPMP.

Each "Forever Flower" is handpicked, cre ated, and engraved by Carol as a way to spread the love and awareness all around.

As of December 2018, Forever Flowers has raised over $46,000 since they started in August of 2017. They  have sold over 2,000 Flowers Across the WORLD and are in over 40 states!

The best way to purchase one of these beautiful pieces is by joining their  Facebook Group"Forever Flowers by Carol" where they post new pieces, you get to take your pick, and they will ship anywhere in the U.S. (first come first serve)!

Past Fundraising Events
We Believe (Breakfast with Santas' / Candy Cane Lane) 2018
Santa, Mrs. Claus and their Elf joined Jim Carroll and Judy Culbertson to celebrate Christmas and raise awareness for research and education for AC/PMP in December of 2018 by hosting two Breakfast With Santas'. 

Many thanks to the Klimas family for annually providing holiday cheer along with raising awareness and funds for ACPMP during their many different events.

And thank you to the many generous  supporters  for contributing to the various events' successes!
Past Educational Events
3rd Annual PMP/Appendiceal Cancer Multidisciplinary Symposium 2019
On Saturday April 6, 2019, Drexel University College of Medicine and ACPMP  hosted  their 3rd annual PMP/Appendiceal Cancer Multidisciplinary Symposium

Thanks to Dr. Bowne, Dr. Esquivel, Dr. Sugarbaker, all other speakers, and the Drexel Medicine team for a  lively and motivational program addressing the next frontiers of research and treatment of appendix cancer  and PMP!

Stay tuned, videos of these presentations will be up on our Video Library soon.
2019 Rare Disease Day
On February 28th, Rare Disease Day was celebrated internationally and Lauren Smith, our Communications and Development Manager, and Deborah Shelton, our Medical Liaison, represented ACPMP at the National Institute of Health.   Did you know that there are 25-30 million Americans who are impacted by rare diseases and that 50% of people with cancer are battling a rare cancer?
Also, in honor of Rare Disease Day, we released a video  introducing Professor Morris from St. George Hospital in Sydney, Australia to talk about their recent Phase 1 investigational clinical trial.

Professor Morris and team were awarded an ACPMP research grant for this project in 2016, and we were excited to share this update with all on  #RareDiseaseDay !
Rare Disease Day 2019 - Professor Morris
Rare Disease Day 2019 - Professor Morris

Regional Cancer Therapies Conference 2019
ACPMP sponsored and participated in the  14th Annual International Symposium on Regional Cancer Therapies , presented by the  Society of Surgical Oncology , which took place from February 16-18, 2019 in Phoenix, AZ and included nearly 200 participants.

ACPMP funded three travel scholarships enabling young physicians to present their research.

During the event, ACPMP held the first in-person meeting of the  ACPMP Medical Advisory Board, enabling us to thank Dr. Laura Lambert, Dr. Andrew Lowy, Dr. Armando Sardi and Dr. Kostas Votanopoulos for their long tenure and steadfast support and welcome new members Dr. Joseph Misdraji and Dr. Bradley Switzer.

World Orphan Drug Congress 2019
ACPMP COO & General Counsel, Karolyn Lewandowski, and Medical Liaison, Deborah Shelton, attended the World Orphan Drug Congress from  April 10-12, representing ACPMP in insightful discussions with a diverse group of stakeholders,
including patient advocates, regulators, industry and media!
More Information
Want to help? 
GO BIG or go small. Everything helps! 

Would you like to get involved in helping to raise funds or awareness for valuable Appendix Cancer and PMP research and education? Need ideas?

Check out our Ways To Help page on how you can assist ACPMP!

Do you want to organize a fundraising event? We can help! Click here to submit our volunteer form or email us at

About Us
The ACPMP Research Foundation is an IRS-designated 501(c)3 charitable organization. We are a predominantly volunteer based organization made up of individuals affected by Appendix Cancer and PMP. Please visit us at  ACPMP Research Foundation for more info.

ACPMP Research Foundation

Contact us at

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