PMP Pals

2016 Year in ReviewPMP Pals has hope for you

∗ PMP Pals is now a registered California nonprofit public benefit corporation

∗ Determined by IRS to be an exempt public charity under section 501(c)(3)

∗ Thank you Libby!

Building a Foundation

∗ Get Well Cards

∗ Bare Bottom Bears

∗ Newsletters

∗ pmppals.net

∗ PMP Pals Facebook page

∗ Blogs

∗ Ask Arthur

∗ Eat Like a King

Programs Old & New

∗ Team meet weekly

∗ Emails at info@pmppals.net

∗ Phone calls at (408) 909-PALS

∗ Messages on Facebook

∗ PMP Appendix Cancer Facebook Group

∗ Inspire

∗ Rare Connect

Providing Hope & Support

Providing Hope & Support

Raising Awareness

∗ Microbiome Team exploring potential relationships between Heliobacter Pylori and PMP

∗ New samples being provided for genomic research

Helping with Research

∗ HIPEC is the standard of care today

∗ Does new technology offer the hope of preventative detection, or avoidance of aggressive treatment?

Looking to the Future

Pseudomyxoma PeritoneiA rare disease deserving better treatment alternatives

∗ PMP is stage 4 cancer of the appendix

∗ The disease strikes 2 people per million

∗ Once the appendix becomes cancerous and bursts, tumors distribute throughout the abdominal cavity and excrete mucin

∗ The condition is also known as “jelly belly”

The Disease

Diagnosis

∗ Disease is often found during unrelated surgical procedures

∗ The disease is often difficult to see in CT & MRI scans

∗ The disease can sometimes be tracked through blood markers

Treatment

∗ The only way to eradicate this persistent tumor is to remove the tumors through 10-15 hours of surgery, then perfuse the abdominal cavity with heated chemotherapy for 1 hour

∗ High grade tumor also requires systemic chemotherapy

∗ This surgery is known to patients as the MOAS – the Mother of All Surgeries

The Specialists

∗ Although there are Specialists around the world, patients are routinely told by local doctors their condition is incurable

∗ Patients who do find CRS+HIPEC are often discouraged and told the procedure will kill them

∗ STAT, a national publication produced by Boston Globe Media, recently chronicled the journey of one patient

∗ https://www.statnews.com/2016/03/24/appendix-cancer-

treatment/

The Patient Journey

∗ Despite its rarity, there are global support and research funding groups

Support & Research

∗ Genetic research is happening today

Genomic Research

http://genomemedicine.biomedcentral.com/articles/10.1186/gm559

Ultimate Challenges

∗ CRS+HIPEC is incredibly invasive

∗ CRS+HIPEC does not guarantee a cure

∗ Some patients require repeat HIPEC

∗ Recovery can take up to 1 year

Better Alternatives Deserved

∗ Can blood tests be created to determine if patients have the disease?

∗ Could tests be developed to determine if chemotherapy is effective?

∗ Could tests identify patients that are at risk, and prevent the disease with a simple appendectomy?

∗ Can population sequencing identify the dominoes of genetic mutation and predict this cancer?

pmppals.netPMP Pals has HOPE for YOU