www.melanoma.org

(800) 673-1290

Melanoma Patients Information Page: www.mpip.org

A M E L A N O M A R E S E A R C H F O U N D A T I O N P U B L I C A T I O N www.melanoma.org

(800) 673-1290

Melanoma Patients Information Page: www.mpip.org

A M E L A N O M A R E S E A R C H F O U N D A T I O N P U B L I C A T I O N

DECEmbEr 2013 / VolumE 13 / NumbEr 4

As the 16th year of Melanoma Research Foundation (MRF) research funding comes to a close, the MRF marks an unsurpassed year of advancing melanoma treatment research. Through our three research initiatives - the research grant program, the ocular melanoma initiative (CURE OM) and the MRF Breakthrough Consortium (MRFBC) - we are proud to announce another increase in research funding totaling $2.4millionin2013. This is a 40 percent increase over 2012 research grant funding! A total of 158 Career Development and Established Investigator applications were received, up from 96 in 2012. Twenty of these applications were specific to ocular melanoma, indicating how needed and

competitive this grant program has become in just two years. We continue to support medical students in melanoma research for the third year. Over 75 leading melanoma experts from around the world volunteered their time to serve as peer reviewers, some of them reviewing as many as 10 applications in a two-tiered review process.

MRF funded projects will address critical areas in melanoma research, such as:

• Howtoovercomeresistancetotherapies for cutaneous and ocular melanoma

• HowBRAFmutationsimpacttheimmune system

• Buildingontheexperienceofipilimumab and PD1/PDL-1 by identification of other proteins that control T cell function

• Discoveryofnewmelanomatargets and drugs

• Understandingwhymelanomametastasizes (spreads)

• Dissectingthegenomicdriversofocular melanoma

• Newwaystomonitormelanomatherapy

The MRF is proud to announce the following new individuals who will be supported by the MRF’s research dollars in the coming year. Congratulations to all of the awardees!

First Year Career Development Awards

AnaAnderson,Ph.D.BrighamandWomen’sHospital,Inc.TIGIT-mediated regulation of immune suppression in melanoma

RichardCarvajal,M.D.MemorialSloan-KetteringCancerCenterOvercoming resistance to MEK inhibition in advanced uveal melanoma

RossFlockhart,Ph.D.StanfordUniversityThe BRAF-regulated lncRNA BANCR regulates melanoma cell migration

FU N DI Ng M E LANOMA R E S EARCH

ARECORDYEAR!

The MRF is dedicated to

improving the diagnosis

of melanoma, advancing

patient care, and

preventing the disease

by educating the public

through awareness

campaigns about risk

factors, including the

dangers of tanning.

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UpcomingEvents

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DECEMBERDecember7Cocoa,FL2nd Annual Jingle Mingle for CURE OM

December21Brandon,ORTim Scott Plays Speed Golf for CURE OM

JANUARYJanuary18GroveCity,OH5th Annual Pasta Dinner for Melanoma Awareness

January25Miami,FLPatient Symposium

FEBRUARYFebruary1NewYork,NYPatient Symposium

February8SanFrancisco,CAPatient Symposium

MARCHMarch1-2LosAngeles,CACURE OM’s Eyes on a Cure Patient Symposium

David Fisher, MD, PhD

Dr. David Fisher has been involved with the Melanoma Research Foundation (MRF) for 8 years and officially joined the Board of Directorsin2009.Heisco-chairof the MRF’s Scientific Advisory Committee in addition to serving on the Board. Outside of his work with the MRF, Dr. Fisher is the Director of the Melanoma Program at Massachusetts GeneralHospitalattheHarvardMedicalSchool.Heisalaboratoryresearcher, chair of the Dermatol-ogy Department, clinician and a medical oncologist.

Dr. Fisher has worked in the

M R F BOAR D OF DI R ECTORS PROFI LE

DAVIDFISHER,MD,PHDmelanoma research field for over 18years.Heismotivatedbyboththe incredible need for melanoma treatment advances and the enormous opportunity to transform the disease through science. Through his work at MassachusettsGeneralHospitaland the MRF, Dr. Fisher strives toward an important goal: the eradication of melanoma fatalities.

Dr. Fisher is internationally known for his research, especially research studying how red hair and fair skin lead to an increased riskofamelanomaformation.Hisresearch focuses on biochemical

mechanisms of gene transcription, developmental biology of melanocytes and molecular analyses of melanoma and childhood sarcomas.

Prior to receiving his PhD at Rockefeller University and his MD from the Weill Medical College of Cornell University, Dr. Fisher graduated from the Curtis Institute of Music in Philadelphia where he studiedthecello.Hecurrentlylives in Boston.

In Dr. Fisher’s own words: “We are currently in an extraordinary era with huge discoveries, yet

For more information about these events and others, please visit www.melanoma.org. If you are interested in hosting or participating in a fundraising event benefiting the MRF, please email events@melanoma.org.

M E LANOMA R E S EARCH AWAR DS

Awards (continued from page 1)

XiLuo,Ph.D.MassachusettsGeneralHospitalCenterforCancerMonitoring melanoma targeted therapy using microfluidic CTC-Chip

BrianPollack,M.D.,Ph.D.EmoryUniversityThe impact of BRAF oncogenic events on immune gene expression

NarendraWajapeyee,Ph.D.YaleUniversitySchoolofMedicineAn integrative genomics approach to identify metabolic drivers of melanoma

AlejandroVillagra,Ph.D.H.LeeMoffittCancerCenter&ResearchInstituteRole of HDAC6 in the modulation of immune-related pathways in melanoma

First Year Established Investigator Awards

EduardoDavila,Ph.D.UniversityofMaryland,BaltimoreModulating immunosuppressive signals in cancer cells using FDA-approved compounds

LeviGarraway,M.D.Dana-FarberCancerInstituteDissecting therapeutic avenues in UM through genomic and functional studies

JacquelineA.Lees,Ph.D.MassachusettsInstituteofTechnologyElucidating the role of BMI1 in metastatic melanoma

Ze’evRonai,Ph.D.Sanford-BurnhamMedicalResearchInstituteUnderstanding and targeting ER stress pathways in melanoma

JohnSondek,Ph.D.UniversityofNorthCarolinaatChapelHillInterdiction of signaling by G-alpha-q to treat ocular melanoma

WilliamTansey,Ph.D.VanderbiltUniversityMedicalCenterMYC as an invisible driver in metastatic uveal melanoma

Medical Student Awards

StephanieDouglasYaleUniversitySchoolofMedicineAntidepressants and melanoma: Is there a link?

SaraHarcharikMountSinaiSchoolofMedicineDefining the role of CD2 in disease progression and overall survival among patients with resectable primary melanoma

AndrewKimNewYorkUniversitySchoolofMedicineInvestigating a role for the Oculocutaneous Albinism Type 2 (OCA2) protein and p53 pathway in melanoma chemoresistance

ScottLindseyUniversityofMiamiMillerSchoolofMedicineA potential for Rec8 in genomic instability during melanomagenesis

KeithRobyUniversityofCalifornia,SanDiegoSchoolofMedicineRole of human antimicrobial peptide cathelicidin and mast cells in IL-9 mediated melanoma immunity

Melanoma Research Foundation Breakthrough Consortium (MRFBC) Grant

MeenhardHerlyn,D.V.M.,D.Sc.TheWistarInstituteExperimental studies in combination therapy of melanoma in vivo studies

To learn more about the MRF’s Research Grant Program, visit www.melanoma.org/research-center.

transforming these discoveries into durable clinical benefit remains challenging. We must make it happen.”

M E SSAg E FROM TH E EXECUTIVE DI R ECTOR

ThePeopleBehindMelanomaResearch

“Thank you for all you do! I lost my father five years ago and I am so grateful that he was able to participate in clinical trials to ultimately help others.”

These are just two of the many comments posted on the MRF Facebook page in response to my request for feedback.

During the SMR dinner I was able to share some of the responses with attendees, many of whom work countless hours in laboratories and never have the opportunity to meet the people who benefit from their work. The group was riveted by the sentiments shared by patients.

After reading a few comments, I announced the formation of a new award, given in the name of the patients who will never have the opportunity to thank these unsung heroes. Starting next year, the MRF will provide SMR with $5,000 each year to fund a Scientific Leadership Award, to be given to the person SMR deems to have done the most to advance melanoma research. It was a great honor to stand in front of these researchers and announce this award on behalf of melanoma patients. I hope this serves to remind scientists that their work is not just about intellectual curiosity – it is about saving lives. This is seen clearly in the last quote I shared:

“My husband is fighting Stage IV (and winning, I might add!) because of research, plain and simple. I thank God every day for the incredibly smart people out there who put so much into researching this beast and figuring out how to conquer it. My husband is my world, and I need him here so from the bottom of my heart and my children’s hearts, I am forever grateful to you.”

Ten years ago a small group of scientists met to create a new society dedicated to uncovering the secrets that have made melanoma so hard to treat. This group started the Society for Melanoma Research (SMR), and turned to the Melanoma Research Foundation (MRF) for the financial support needed to get up and running.

I cannot overstate how important this meeting was. At the time, melanoma was a dead-end for research. Most people stayed away from it, focusing rather on breast or lung cancer. Funding was scarce and positive results wererare.Havingawayfortheseresearchers to come together transformed the field. One European scientist left the meeting saying, “I was planning to quit researching melanoma, but now I have decided to stay with it.”

In early November, SMR met again, with 750 attendees from around the world spending three days hearing about the latest and best melanoma research. On the occasion of this 10th anniversary I put a note on the MRF’s Facebook page asking patients and caregivers, “If you could say one thing to the scientists who have been working on melanoma, what would it be?” The post was viewed by over 13,000 people, “liked” by hundreds and generated pages of responses.

“Thank you for giving us more time together! There is nothing more precious than time. Your hard work and dedication are truly lifesavers! We are truly grateful… keep going! We need you!”

Tim Turnham, Executive Director

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M R F SCI E NCE U PDATE

CUREOMPartnerswiththeNationalInstitutesofHealthCancerGenomeProjectThe Cancer Genome Atlas (TCGA) is a major initiative of the National InstitutesofHealth(NIH)focusedon identifying changes in each cancer’s genome, of which DNA is a component, to understand what drives each of the more than 200 forms of cancer and start to lay the groundwork for improving prevention, early detection and treatment.

The MRF’s CURE OM initiative was excited when TCGA decided to incorporate uveal melanoma into the list of cancer that will undergo this rigorous and comprehensive scientific analysis. TCGA has limited resources to devote to “rare cancers,” and CURE OM is thrilled to be able to help facilitate the inclusion of uveal melanoma in the analysis. The comprehensive data that will be generated by TCGA’s network will be freely available and widely used by the cancer community.

This is another huge step forward

for the OM community and the acceleration of scientific advances, ultimately leading to more effective treatments, and, ultimately, a cure for ocular melanoma. The MRF’s CURE OM initiative continues to lead the field in supporting scientific advances—in addition to the recent TCGA collaboration, CURE OM also has partnerships with the National Cancer Institute (NCI) and the Society for Melanoma Research (SMR) and has committed over $800,000 in research grants over just a 2-year period.

M R F E DUCATION U PDATE

CUREOMWebinarOn July 9, the MRF’s CURE OM initiative hosted a webinar that focused on dealing with the psychosocial aspects of living with ocular melanoma. Genetics counselors Susan E. Walther, MS, CGC and Lisa Kessler, MS, CGC worked together to present the topic “To be biopsied or not? Coping with the biopsy results.” The second topic that was covered during this webinar was “General Psychosocial Concerns about Living with Cancer,” presented by Arewa A. Banjoko, MSW, LCSW.

If you missed this webinar but would like to see it, please visit www.cureom.org. If you have any questions regarding this webinar or any other CURE OM events, please email cureom@melanoma.org.

CURE Ocular Melanoma

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I was born and raised on the Eastern Shore of Maryland. I have lived here most of my life. I have two wonderful, grown daughters: Michael Ann lives in Seattle and Sara is finishing up her Music Education Degree at Bridgewater College in Virginia. I have worked in the Talbot County Public School System for 21 years, currently as the Coordinator for Career & Technology Education. For the past 8 years I have also served as the Executive Director of the Eastern ShoreHigherEducationCenter.

Each semester, I speak to Chesapeake College Fitness and Wellness students during their module on cancer. I share pictures of my leg (with the more than 100 staples and stitches) and information about melanoma with them. I also have them check out the Melanoma Research Foundation’s (MRF) website to learn more about the deadly cancer.

I was diagnosed with Stage IIIa melanoma in September 2007 This came as a shock because my melanoma looked like a mosquito bite, not a mole. Everyone was surprised when the

FEATU R E D M R F VOLU NTE E R

DeborahUrrypathology report came back. I had two major surgeries, including a total lymph node dissection in my right groin. I tried interferon treatments but after one week, I was “dismissed” from treatment because the interferon was poisoning me instead of helping me. I applaud all of those who tolerated the interferon for a full year!

My maternal grandfather died from “black mole cancer” (now called melanoma) at the age of 53 when I was not quite 7 years old.Hisparentsandmostofhissiblings died from cancer – most of them from melanoma. My brother was diagnosed with Stage I melanoma on his left arm in 2001 and has had no recurrence.

After being diagnosed, I was frantically searching for up to date information about melanoma treatments, etc. and I was fortunate to come across the MRF. I spoke with Mary Antonucci, Director of Volunteer Services, and she was so helpful. Soon after that, I attended a volunteer training in Philadelphia. I met some of the most amazing

melanoma fighters and learned a lot more about melanoma and what resources were available through the MRF.

In 2012, I began volunteering as a peer-to-peer Phone Buddy I have had one buddy and have just been given a second one. I am so happy to be able to listen to newly diagnosed melanoma fighters who have a lot of the same questions and frustrations that I had. It is nice to have someone who is not related or your friend to really share things with and vent. The hardest part is to not give advice, but to listen and be a sounding board. I am excited talk with my second phone buddy. I hope they get as much from the program as I have. It is a small way to give back and to, hopefully, help someone else

get through this horrible experience.

My words of advice to someone newly diagnosed:

1. Be your own advocate and if you can, take someone with you to EVERY doctor’s appointment.Havethemtakenotes for you, because you will feel like a deer in headlights. Don’t be afraid to ask questions – lots of them!

2. Take care of yourself and don’t be afraid or ashamed to play the “cancer card.” You can say “NO” when you don’t feel like doing something.

3. Be positive, think positive, act positive! This doesn’t mean you have to smile and be happy all the time. It just means that you believe you will beat melanoma.

Written by volunteer Deborah Urry

Deborah Urry (center) with her daughters, Sara and Michael Ann

Beginning in 2014, the MRF will be partnering with Clinical Care Options (CCO) and the AnnenbergCenterforHealthSciences at Eisenhower to provide an innovative educational program for melanoma patients and caregivers. Each event will feature two simultaneous educational sessions - one dedicated to the education of patients and caregivers, and one dedicated to healthcare providers.

This novel approach is the first of its kind to combine both patient and clinician education. The patient and caregiver portion will be coordinated by the MRF. The clinicians-only session, coordinated by CCO and Annenberg, will feature interactive case discussions on best practices for advanced melanoma. Clinicians can earn CME for attending. The joint afternoon session for both

clinicians and patients will feature discussions on the latest developments in melanoma clinical research, plus an interactive panel discussion on communication challenges and overcoming barriers to optimal care.

Upcoming dates and locations include:

•Miami,FL–Jan25,2014

•SanFrancisco,CA–Feb1,2014

•NewYork,NY–Feb8,2014

To register for the Miami symposium, please visit education.melanoma.org/Miami2014. To learn more about the clinician-only sessions, please visit www.clinicaloptions.com/navigatingmelanoma.

M R F E DUCATION U PDATE

TheMRFOffersaNewSpinonPatientEducation

George, Drew Williamson, Zach Lindeman, George Cespedes, Matt Wayne and David Kay for racing with us in Boulder. They are a part of our national team that has raised almost $100,000 so far! With several

M R F EVE NTS U PDATE

TheMRFatIRONMAN®70.3BoulderThis year’s event at the IRONMAN® 70.3 Boulder was a great success for the MRF! Several of our Miles for Melanoma triathlete team members were in attendance. Thanks to Tim Cason, Lisa

more races to go, we’re sure this is going to be a great year for the MRF’s triathletes.

The weekend got even better when Leanda Cave, the current female IRONMAN® World Champion, and Amanda

Stevens, the female IRONMAN® 70.3 U.S.A. Pro Champion, both stopped by for pictures with our staff and athletes. We’re honored to have their support.

Please visit www.melanoma.org to learn more about the mrF’s education, research and advocacy efforts. The mrF is a 501(c)(3) organization. Your donation is tax deductible to the fullest extent of the law. The mrF also welcomes gifts through workplace giving campaigns, including the Combined Federal Campaign (CFC) and employee matching gifts. Contact your Hr department for details on designating your contribution. CFC #35748

TheMRFThanksOurGenerousCorporateSponsors

Makeadifferenceinthefightagainstmelanoma.

PleasedonatetotheMRF.

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CancerSupportCommunities

The MRF recently teamed up with Cancer Support Communities (CSC) to promote the Cancer Insurance Checklist, an online tool designed to help you compare insurance plans and consider your health needs when shopping for insurance in yourstate’sHealthInsuranceMarketplace/Exchange.

You can use the checklist as a helpful tool:

•Ifyouhavecancer,ahistoryofcancer or are at risk for cancer

•Whenevaluatinginsuranceplans

•Whendiscussingyourinsuranceneeds with your navigator or Marketplace/Exchange representative

•Whendiscussingyourcancercareneeds with your health care provider

To learn more and to get the checklist, please visit www.CancerInsurance Checklist.org.

M R F E DUCATION U PDATE

PartnershipsProvidePatientswithNewResources

CancerCommons

Contribute your data for melanoma research! Cancer Commons has launched the Donate Your Data (DYD) platform, offering melanoma patients the opportunity to provide researchers with data. Researchers can use your data to test and refine their hypotheses about cancer biology and treatment and to develop new therapies that target your specific tumor type. Physicians can use the data to determine the best treatments, including clinical trials, for patients like you.

By donating your data, you will be helping yourself as well as science. Using the DYD platform will allow you to receive reports on studies that use your data, receive notifications on findings that may result and be alerted when conferences, publications and online discussions take place. You can also choose to be alerted when clinical trials and studies target patients like you. To learn more and to donate your data, please visit mrf.dyd.cancer commons.org.

M R F EVE NT U PDATE

FirstAnnualMilesforMelanomaCentralOhio5kRun/WalkThe inaugural Miles for Melanoma Central Ohio 5k run/walk was held in Grove City, Ohio on October 5th. The event was an incredible success! Over 250 participants and 25 teams raised $41,500 for the MRF! $9,300 was presented by John Gerlach in memory of his brother and Grove City native, Joe Gerlach. Joe lost his battle with melanoma just a month before the race. Radio Hostandmelanomasurvivor,George Wolf from 103.5/104.3 Rewind in Columbus, Ohio served as the event emcee. Dr. George Skandamis and Physician Assistant Sara Taylor from

Universal Dermatology in Dublin, Ohio provided free skin screenings, and many attendees took advantage of the opportunity to get their skin checked. Cheerleaders from Finland Middle School and the girls’ soccer team fromFranklinHeightsHighSchool were present and cheered participants along the route. They volunteered their time in memory of Mandy Dean, a former student of both schools that passed away from melanoma in 2007. A huge thanks to everyone in Ohio and across the U.S. who helped make this first year event fun and impactful!!

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Dr. George Skandamis, Physician Assistant Sara Taylor and their fellow staff from Universal Dermatology in Dublin, Ohio. The team volunteered their time to provide free skin screenings during the 1st Annual Miles for Melanoma Central Ohio 5k Run/Walk in October.

Brynn Dickman, age 8, participated in her first 5k run/walk during the 3rd Annual Music City Miles for Melanoma 5k Run/Walk in Nashville, TN. She won 1st place for the 14 & under age group! Fun fact: Brynn is the daughter of Jena Dickman, the MRF’s Miles for Melanoma Program Event Coordinator.

Kimberly Jessop, a melanoma survivor, crosses the finish line

at the 3rd Annual Music City Miles for Melanoma 5k Run/

Walk in Nashville, TN while her friends cheer her on. Team KJ

raised over $3,400!

Team Willett had over 79 members supporting Amy and Alan Willett at the 3rd Annual Music City Miles for Melanoma 5k Run/Walk in Nashville, TN. The team raised over

$8,000 for melanoma research!

The annual Brett Lamb Golf Tournament had 112 golfers and 20 volunteers who came out to support the MRF at the Rumbling Bald Golf Course in Lake Lure, NC on September 7. The group raised $8,900 for melanoma research! Pictured: Brett’s family and his closest friends who co-host the annual tournament. Left to right - front row: Pete Baynard, Carol Lamb, Kimberly Nemecheck, Austin Means, Meghan Lamb, Elle Means, Eric Blanton, Tara Toney, Paula Davis, Stephen Fisher, Amanda Davis. Back row: Brian Gaster, Patrick Hill, Tom Lamb, Clayton Toney, Tim Davis, Clint Roberson, Jeff Davis.

The Miles for Melanoma Las Vegas team during the One Run Las Vegas on September 14. The Miles for Melanoma team included 130 runners.

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Team MC’s Infantry travelled to the 1st Annual Miles for Melanoma Central Ohio 5k Run/Walk from Lexington, KY. The team raised $1,070 for melanoma research!

Pat Myers (center) poses with members of Team Pat at the 3rd Annual Music City Miles for Melanoma 5k Run/Walk in Nashville, TN. Pat, a 20 year melanoma survivor, credits her survival to her husband (back left) for demanding she visit the doctor 23 years ago for a suspicious mole.

In early October, Gayla and Craig Timm raced in the Washington, D.C. Army Ten-Miler to raise money for CURE OM. They have raised over $6,000 for ocular melanoma research so far through their fundraising initiative, 1,000 Miles for Ocular Melanoma!

Actor Jim Rebhorn was presented with the MRF’s Courage Award at the New York City Wings of Hope for Melanoma gala in October for bravely battling melanoma.

Thad Beaty, the guitarist of nationally-known band Sugarland, got his skin checked by the MRF’s volunteer physician assistant at the IRONMAN Lake Placid event in September.

John Gerlach, Lynn Talbott and John’s mom Mary at the 1st Annual Miles for Melanoma Central Ohio 5k Run/Walk. John’s brother Joe Gerlach passed away from melanoma a few weeks before the race. Joe hosted a golf outing in June to raise money for the MRF. His family attended the race and John presented a check from the golf outing for $9,300 in Joe’s memory.

On October 6, Harvey Levine hosted a concert

benefiting the MRF’s CURE OM initiative in

honor of his sister, Sheila, an ocular

melanoma survivor. The concert raised almost

$20,000 money for ocular melanoma research!

(left to right): CURE OM Patient Steering

Committee member Esther Damaser, CURE OM’s Director Dr. Sara Selig, concert honoree

Sheila Levine, June Jasen, Gayla Timm and

Sam Buirski.

Dr. Lynn Schuchter, Chief of Hematology/Oncology at the University of Pennsylvania’s Abramson Cancer Center, member of the MRF’s Board of Directors, founding member of the Melanoma Research Foundation Breakthrough Consortium (MRFBC) and internationally renowned melanoma expert, received the MRF’s Humanitarian Award during the inaugural Wings of Hope for Melanoma gala in Philadelphia.

I N TH I S I SS U E

•FundingMelanomaResearch•Research&ScienceUpdates•FeaturedVolunteer•FeaturedBoardMember•UpcomingEducational&FundraisingEvents

OurMissionStatementTo support medical RESEARCH for finding effective

treatments and eventually a cure for melanoma.

To EDUCATE patients and physicians about the

prevention, diagnosis and treatment of melanoma.

To act as an ADVOCATE for the melanoma

community to raise awareness of this disease and

the need for a cure.

The MRF is the largest independent organization devoted to melanoma.

MelanomaResearchFoundation

1411 K Street, NW, Suite 800, Washington, DC 20005

Find us online: www.melanoma.org

twitter.com/ CureMelanoma

facebook.com/ Melanoma.Research.

Foundation

youtube.com/ CureMelanoma

TheMelanomaResearchFoundation(MRF)isworkingtotransformmelanomafromoneofthedeadliestcancerstooneofthemosttreatable.Learnhow.