Appendix Cancer / PMP Research Fundatin PMP Pals Cnference Octber 9, 2016
What d we d? ACPMP is dedicated t 1) funding research t find a cure fr PMP, Appendix Cancer, and related Peritneal Surface Malignancies (PSMs), and 2) funding educatinal prgrams t educate physicians and patients abut these diseases.
Wh are we? We re just like yu patients and caregivers affected by appendix cancer, PMP, and peritneal surface malignancies Frmed in 2008 under the name Pseudmyxma Peritnei Research Fundatin (PMPRF) 501(c)3 charitable rganizatin based in the US but with the gal f a glbal reach Renamed ACPMP in 2016 t recgnize the imprtance f appendix cancer in public and patient perceptin
Frmatin and gals Lisa Kurtz Lucian funder and PMP patient Diagnsed in Octber 2007 Started ACPMP in July 2008 Passed away in Octber 2012 Saw that there was little gvt. funding and n rganizatin dedicated t bjectively funding the mst prmising PMP and appendix cancer research Set a gal t raise $1 millin t fund related research within 5 years Created a sense f selflessness, actin, urgency and imprtance f the wrk
Building the team Shared Experience
It takes a big team Bard f Directrs: Jerry Lewandwski, President PMP survivr (diagnsed 2007) Susan Ortega, Secretary survivr (2009) Dan Lucian caregiver & spuse (Lisa Lucian) Judy Culbertsn caregiver & spuse (Dutch Culbertsn) James Carrll caregiver & friend (Dutch Culbertsn) Therese Surges caregiver & spuse (Keith Surges) Jhn Ziss, Treasurer caregiver & nephew (Lisa Lucian) Vlunteers: Office supprt, legal advice, fundraisers, graphic design, accunting/tax preparatin, etc.
It takes a big team Medical Advisry Bard: Steven Ahrendt, MD, FACS University f Pittsburgh Medical Center, Pittsburgh, PA Surgical Onclgy Laura Lambert, MD, FACS UMass Memrial Medical Center, Wrcester, MA Surgical Onclgy Andrew Lwy, MD, FACS University f Califrnia, San Dieg Mres Cancer Center, San Dieg, CA Surgical Onclgy Armand Sardi, MD, FACS Mercy Medical Center, Baltimre, MD Surgical Onclgy Knstantins Vtanpuls, MD, PhD, FACS Wake Frest University, Winstn-Salem, NC Surgical Onclgy
What is getting dne? Research Educatin Fundraising
Research apprach Seek ut bjectively wrthwhile research using a rigrus RFP submissin and review prcess ACPMP partners with the United States Natinal Organizatin fr Rare Disrders t issue RFPs and review RFP respnses Fcus n basic science, fundatinal medical research that culd be used t supprt mre rbust studies, phased trials, etc. Studies that fcus n tumr bilgy, genetic prfiling, translatinal studies, immuntherapy, etc. Use 2 year / $50,000 grants t diversify ptins and spur prgress
Research funded: 18 grants $850K awarded + $100K pending in 2016) - Drexel Medical Schl, PA University f Maryland, MD Creightn, NE (x3) UC San Dieg, CA (x2) Wake Frest Schl f Medicine, NC - University f Pittsburgh, PA (x2) - May Clinic, Rchester, MN - Osl University Hspital, Osl, Nrway - Natinal Cancer Institute, Milan, Italy - The Christie NHS Fundatin Trust, UK (x2) - Basingstke NHS Fundatin Trust, UK - Natinal Institute f Health and Medical Research, Paris, France - Natinal Cancer Center Research Institute, Tky, Japan
Published research lg Lg f imprtant research published frm 2004 thrugh present: https://acpmp.rg/published-research Research funded at least in part by ACPMP grants DNA / genmic studies lking at gene mutatins, prgnstic mlecular subtypes, verall genetic prfiling f PMP Studies re: targeting mucin prductin and limiting mucin prductin as a therapeutic gal Muse mdel studies related t the efficacy f therapeutic strategies and anti-angigenic therapies (i.e., drugs that limit bld vessel frmatin)
Key Educatinal Events Patient and Physician centered sympsia arund the US Annual UMass Patient & Practitiner Sympsium (Wrcester, MA) Midwest Sympsium 2015 \ The Edward Hspital (Naperville, IL) West Cast Sympsium 2015 \ UC San Dieg (San Dieg, CA) East Cast Sympsium 2015 \ Drexel University Cllege f Medicine (Philadelphia, PA) Annual Mid-Atlantic Wrking Grup Practitiner Meeting (UMD, Mercy Medical Center Baltimre, Sentara Virginia Beach, VA) Annual UPMC-led Reginal Therapies Cnference Bi-ennial Internatinal Cngress n Peritneal Surface Malignancies, by the Peritneal Surface Onclgy Grup Internatinal (PSOGI) 10th biennial meeting this Nvember in Washingtn, DC
Fundraising Diversified effrts frm patients and caregivers All manner f lcal events awareness walks, runs pub crawls, basketball games spnsred marathns, triathlns, ultra-marathns t-shirt sales, schl fundraisers, wrk jeans day casin nights Memrial dnatins / remembrances
Cllabratin is the key Patients & Caregivers PMP Pals ACPMP Appendix Cancer Cnnectin Be Unintimidated Bellybuttns list serve grup Multiple Facebk grups Clinical Centers f Excellence & Training UPMC Reginal Therapies Cnference & Perfusin Webinars Mid-Atlantic Wrking Grup physician sympsia / best practice sessins FARGO PSOGI Researchers FARGO American Sciety f Peritneal Surface Malignancies (ASPSM) Numerus US research centers bth at PSM centers and elsewhere Glbal centers Japan, France, Netherlands, UK, Germany, and thers
Questins?