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

Winter 2014 / Volume 14 / number 4

The purpose of the Melanoma Research Foundation is to support medical research to increase the effectiveness of treatment and to seek a cure for the deadly cancer known as Melanoma, and to act as a resource for melanoma patients, their family and friends.

– from the first bylaws of the MRF, drafted in 1997 by founder Diana Ashby

When MRF founder Diana Ashby was diagnosed with melanoma in 1993, she was appalled at the lack of treatment options. Her doctors told her the only way to have more treatment options was to fund research. Diana turned her frustration into action and created the Melanoma Research Foundation (MRF). As is clearly demonstrated by the language in the by-laws Diana drafted, then, and now,theMRFexiststofundmelanomaresearchinsearchforacureandtosupportpatientsimpactedbythiscancer.

Words are important, and the phrasing of Diana’s vision is critical. She didn’t seek to fund melanoma research just for research’s sake, but for the sake of the people facing the disease. This guidance is part of the MRF’s daily mantra, and as a result, continues to shape the organization’s efforts over the years.

Recently, the MRF awarded a record number of grants to 22 scientists and six medical students across 17

different institutions. The MRF’s Research Grant Program expanded this year to includeTeamAwards, which provide funding to a research team addressing an area of unmet need that is of critical importance to patients: Prevention, Rare Forms of Melanoma, Metastases, Brain Metastases, Response to Treatment, or Resistance.

Many volunteers are passionate about early detection, and in response the MRF launched the#GetNaked campaign. Through this, the MRF reached more people than ever before. Millions of people saw the #GetNaked images and important early detection messages. People from all over the world shared the images, facts about early detection and the MRF’s self-screening guide. On several occasions, the MRF heard cancerous lesions were found because the #GetNaked images and messages prompted them to seek a dermatologist.

The worldwide sharing of#GetNaked reflects the reality that melanoma does not honor national borders. This year about 1/3 of the traffic to www.melanoma.org will come from outside the United States! Recognizing that melanoma is a global issue, the MRF recruited a steering committee with representatives from Brazil, Sweden and Australia to organize the first everGlobalMelanomaCoalitionRoundtable. Representatives from leading melanoma advocacy groups from 12 countries will gather to discuss how

best to collaborate and address this disease. A total of 42 groups responded to a survey about patient needs and every group expressed interest in participating in the new coalition. The Roundtable will take place just prior to the annual Society for Melanoma Research conference in late November 2014, so expect updates about the impactful discussion in early 2015.

In response to the growing rates of pediatric melanoma, the MRF convened the first-ever PediatricMelanomaSummit, bringing together more than 100 people from across the nation who have been impacted by melanoma. Children with melanoma as young as 16 months attended with their families and created friendships and support systems that will help them cope with the daunting journey of fighting this cancer. Most of those children had never met another child with melanoma before this meeting. They were able, for the first time, to talk with other kids who understand what it means to go to school with a scar on your face or arm.

Diana’s vision has taken the MRF places she never could have envisioned, but every new program, every initiative is grounded in this core question: Is it focused on how best to help melanoma patients, and their families and friends? In addition to the programs listed above:

N EWS

Patient-CenteredPrograms

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.

RESEARCHEDUCATEADVOCATE

(continued on page 2)

• The MRF is creating new initiatives to dedicate more resources and funding for pediatricandmucosalmelanoma – two types of this cancer that are currently underserved.

• The MRF’s CertifiedMelanomaEducator(CME) program will launch in 2015, providing melanoma advocates across the nation

with the information needed to effectively spread awareness and help prevent diagnoses.

• Strategicpartnerships are being solidified to help the MRF expand its reach even further to ensure an even greater impact on this disease in 2015. MRF advocates and volunteers will receive tools to help implement key elements of the Surgeon General’s recently-announced

CalltoActiontoPreventSkinCancer.

Diana passed away just a few months after she founded the MRF, and just two months before the first ever MRF research grant was awarded. Her vision lives on, however, and her passion for helping patients is reflected in everything the MRF has done and will do.

Patient-CenteredPrograms(continued from page 1)M R F EVE NT U PDATE

MilesforMelanomaParticipantsRaise$1Million

2

This has been an incredibly successful year for the Miles for Melanoma (MFM) program with close to 7,000 participants raising nearly $1 million – and still counting!! The MRF could not do it without you.

The MRF’s top 25 MFM fundraisers alone raised more than $114,000. Thank you for all of your hard work!!

Michael SolowCaryl WeinbaumDon JonesRobert ProthoJohn GroetchSarah AdamsMaryann FarrellKristofer JohnstonKen StrongGayla TimmBeverly FamianoShannon CastlemanRachel VarnCarrie WilliamsAlexandra SepulvedaBob RappThomas GarritySteve PlatzChris GranbergBrian McElroneSherry MaraghMargaret BowenWhitney GraggErik JohnsonMarion Groetch

The Miles for Melanoma program is a series of events that allow participants to support and raise money by taking part in athletic activities throughout the country. Funds raised by these individuals support the melanoma research that’s zeroing in on important breakthroughs that people fighting melanoma so desperately need.

For more information about upcoming 5ks, visit our calendar of events: www.melanoma.org/get-involved/calendar-of-events.

A 2013 study published in the journal Pediatrics indicated that diagnoses in children are rising by approximately 2% each year. And, while mucosal melanoma only accounts for about 1% of melanoma diagnoses, often it is not diagnosed until after it has reached an advanced stage. Knowing that there are a great deal of unmet needs among people impacted by these types of melanoma, the MRF realized that something more needed to be done.

With this in mind, the MRF launched the first ever Pediatric Melanoma Summit this past September with help from Brenda Busby, the mother of a pediatric patient. Upon seeing

M R F E DUCATION U PDATE

TheMRFIncreasesEffortsinPediatricandMucosalMelanoma

the positive impact of the Summit, the MRF recognized the need for a full-time staff person to focus on pediatric and mucosal melanoma, two very rare types of melanoma.

Brenda was the perfect fit for this position as she has served as an MRF volunteer and advocate, getting involved after her daughter, Kadynce, who is now nine years old, was diagnosed at the age of two. Since Kadynce’s diagnosis, Brenda has educated herself on all types of melanoma and has formed relationships with doctors, nurses and social workers and has connected with hundreds of families all around the world.

As the pediatric and mucosal melanoma program coordinator, Brenda will assist in the planning and implementation of events and activities for the MRF, focusing specifically on the pediatric and mucosal melanoma audiences. She will also coordinate pediatric and mucosal steering committees’ scientific efforts, helping us ensure that every person diagnosed with melanoma receives the support, education, resources and treatment information they need.

For additional information on these exciting new programs, contact Shelby Moneer, the Director of Education, at education@melanoma.org.

The Cancer Genome Atlas (TCGA) Project is a major initiative of the National Institutes of Health (NIH) focused on identifying changes in each cancer’s DNA, or genome, to understand what drives each form of cancer (of which there are more than 200) and start to lay the groundwork for improving prevention, early detection and treatment.

The MRF’s CURE OM initiative partnered with TCGA in 2013 to incorporate uveal melanoma into

M R F SCI E NCE U PDATE

CUREOMPartnerswiththeNIHCancerGenomeProjectthe list of cancers that will undergo this rigorous and comprehensive scientific analysis. TCGA has limited resources to devote to “rare cancers,” and CURE OM is thrilled to have helped 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. Currently, all samples have been secured by the NIH and data is currently being collected. The uveal

melanoma working group has begun analysis and will be working to complete this analysis over the coming 1-2 years.

The MRF’s CURE OM initiative continues to lead the field in supporting scientific advances – in addition to the recent TCGA partnership, CURE OM also has partnerships with the National Cancer Institute (NCI) and the Society for Melanoma Research (SMR) and has committed around $1 million to support research.

M E SSAG E FROM TH E ExECUTIVE DI R ECTOR

ThePeopleBehindTheCause

As you read in this issue’s cover

article, MRF founder Diana

Ashby had a clear vision for the

organization. Much of this vision

was driven by her dedication to

the people impacted by

melanoma. The MRF staff and

Board are reminded daily about

the importance of never

forgetting for whom we work. To

that point, it is very important to

me to spend time speaking with

people who are facing this

disease. One of the most

rewarding aspects of my job is

the Miles for Melanoma 5k

program, and I try to attend as

many as possible. You might

think it’s because I love to run

(I don’t – it’s actually more of a

love/hate relationship), but that’s

not it. To me, the 5k run/walks

represent who the MRF is and

why the organization exists. At

these events, I speak to young

adults who have just been

diagnosed, to parents who

recently lost a child, to family

members determined to do

whatever they can to help their

loved ones live longer and better

lives, and to others who may

have no affiliation with melanoma

whatsoever. This wide variety of

people who run/walk in the

Miles for Melanoma program

characterize the range of

programs the MRF is committed

to growing. At these 5ks, we

have the opportunity to learn

Tim Turnham, Executive Director

from one another, support one

another and perhaps even

change people’s lives.

At a recent MRF run/walk, I

challenged the attendees to

become an ambassador – an

ambassador for melanoma

prevention and early detection.

Just by being in attendance,

they were helping to raise

desperately-needed funding for

melanoma research. But my

challenge to them was to do

something more – stay out of

the sun during prime sunlight

hours, get a full-body check by a

dermatologist once a year,

educate their friends and family

about key risk factors and learn

the many ways to be sun safe

year round. The feedback was

strong and positive, because

everyone there wanted to help

fight this disease. People felt

emboldened to do whatever

necessary to meet this

challenge. It is dedication and

passion like this – from the

volunteers, fundraisers and

advocates – that makes these

5ks so rewarding to me. Thanks

to the tens of thousands of

people who attend our Miles for

Melanoma events throughout

the year, the MRF can remain

focused on meeting the needs

of everyone impacted by

melanoma. Thank YOU for

being one of these unfaltering

supporters of this cause.

M R F E DUCATION U PDATE

TheMRFOffersExcitingNewEducationalResourcesin2014By the end of 2014, the MRF

will have finalized a great deal of

new or updated educational

resources for a variety of

target audiences.

Updates to three of the MRF’s

existing popular print resources

have been completed – the “It’s

a Fact Sheet”, the “Take a Stand,

Don’t Tan” poster and “The 5

Facts poster.”

In addition to these updates, the

MRF has been working on two

new important pieces of

literature targeting prevention

efforts. The first piece is a 5”x7”

postcard called “The Truth about

Tanning.” This piece tackles

common questions and myths

related to both natural and

artificial tanning and was

created with the education of

teens and their parents in mind.

The second piece that will be

available soon is our “Parent’s

Guide to Melanoma Prevention”.

This brochure will highlight ways

that parents can help protect

children of all ages from having

to face a melanoma diagnosis,

especially newborns and

toddlers, and teach them how to

be sun safe and proud of the

skin they’re in. As we continue

to learn more about melanoma

prevention, we know that

starting early with prevention

messaging may help in the

reduction of melanoma

diagnoses in young people.

In the same vein, the MRF is

working to create new web

resources including a new page

on pediatric melanoma

resources, detection and

treatment options. Two

additional web resources that

will be available by the end of

the year include the MRF’s

Statement on Sunscreen Safety

and the MRF’s Statement on

Spray Tanning.

All of these resources, and

more, are available at

www.melanoma.org or

please email

education@melanoma.org

for more information.

3

The MRF is pleased to announce

the date of the 2015 Legislative

Hill Day. Join fellow advocates

March 7-9 in Washington, D.C.

for a free training and meetings

with state legislators.

This is an opportunity to

network and meet other

volunteers, find out what the

MRF is doing in the fight

against melanoma and to learn

how to effectively communicate

with Congress.

M R F ADVOCACY U PDATE

JointheMRFforthe2015LegislativeHillDay!

From the Surgeon General’s

Call to Action to the proposed

increase in federal funding for

melanoma research, a lot is

going on in the melanoma

space and now is the time to

take action!

For more information and to

register, contact Mary Antonucci,

Director of Advocacy and

Volunteer Services, at

volunteer@melanoma.org.

4

As we enter the season of giving, please consider making a gift to support the efforts of the MRF. We know you have a lot of choices around how and where to invest your charitable giving. Here are a few reasons why you may want to consider the MRF:

• James is not yet two years old, but has already gone through more than any person should have to go through: He has had surgery to remove a melanoma from his face, leaving him with a long scar, and interferon treatment at any age is not easy. At the MRF’s Inaugural Pediatric Melanoma Summit, though, his smile lit up the room. The summit was made possible by generous contributions.

YEAR-E N D G IVI NG

YourYearEndGiftisCriticaltoHelpingPatients• Steve is a cancer doctor, but

he also does important

research into new and better

cancer treatments. When he

was just out of his training he

tried to find a way to fund his

research, but nothing worked.

Then he found the MRF and

was awarded a Career

Development Award. That

award opened the door to

more grants and, now, a

career of doing important

research in melanoma.

• TheRobertsfamily stood

on the bank of a river just

after finishing a Miles for

Melanoma walk. The man

who had been the husband,

father, grandfather of this

family had died of melanoma

just a month before the event.

Coming to the Miles for

Melanoma walk was an exercise

in healing, and in hope. They

said to MRF staff, “Thank you

for making it possible to turn

our loss into something

positive for other patients.”

The vision of the MRF is a world

without melanoma, and we work

toward that vision by supporting

research, by funding programs

to help patients and caregivers

and by raising awareness. If this

vision resonates with you, we

invite your support. The MRF

has the highest rating from

Charity Navigator, demonstrating

we are run efficiently

and effectively.

The real evaluation of the

organization, though, comes

from the people we serve. The

names listed above have been

changed, but the stories are

real. We have thousands of

stories just like this, about

people whose lives have been

touched through MRF programs

made possible by donations

from people just like you.

Please use the enclosed

envelope or go to

donate.melanoma.org

to make your life-changing

year-end gift today. Thank you

for your part in the fight and for

any additional help you can offer.

M R F E DUCATION U PDATE

TheMRFHostsInauguralPediatricMelanomaSummitIn honor of pediatric cancer

awareness month in September,

the MRF hosted the Inaugural

Pediatric Melanoma Summit, the

first summit of its kind. Twenty

patient families from throughout

the U.S. attended the three-day

event from September 12-14 in

Grapevine, TX, at the Great Wolf

Lodge. The Lodge is known for

its large indoor waterpark,

kid-friendly activities and

restaurants, and proved to be

the perfect sun-safe place for

this event.

Dinner on Friday night allowed

the families and patients (who

ranged from 16 months to 13

years old), many of whom had

only previously met on social

media or over the phone, to

meet face-to-face for the first

time. On Saturday, the patients

and their siblings worked with

social workers and child life

specialists on art and play

therapy where they were

encouraged to use art to create

their melanoma stories. Many of

the children’s stories were about

how difficult it was to deal with

their scars when they went back

to school and how they were

able to overcome it. Sharing

these stories with one another

provided the participants with

much-needed support and

assurance that they have been

unable to find elsewhere.

Kailey Lee, mother of 17-month-

old patient, Robby, said, “The

best medicine for these kids is

being around other kids like

them. The Summit made it

possible and created bonds that

will last forever.”

While the kids worked through

art and play therapy, the parents

heard from pediatric melanoma

experts Cynthia Herzog, MD and

Dennis Hughes, MD, PhD from

MD Anderson Cancer Center.

They spoke about clinical trials,

treatment options, showed

educational videos and ended

the morning session with a one-

hour Q&A panel with the experts.

A special thanks to the following

individuals and organizations for

their goody bag donations:

Addison’s Army Against

Melanoma, Construction

Masters, Diversified Finishes,

Houston Texans, Rodan+Fields®

and The Elizabeth Dunn Family,

Sun Bum®, Texas Ski Ranch and

Tomball Regional Hospital.

The MRF is grateful to everyone

who participated in the

Inaugural Pediatric Melanoma

Summit and is hard at work on

the next one. Keep a look out

for the date and location of the

2015 Pediatric Melanoma

Summit or email

education@melanoma.org

for additional information.

5

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

TheMRFThankstheFollowingCompaniesforTheirSupport

Makeadifferenceinthefightagainstmelanoma.

PleasedonatetotheMRF.

M R F BOAR D OF DI R ECTORS PROFI LE

BillReillyAfter learning about his

melanoma diagnosis, Bill Reilly

joined the MRF’s Board of

Directors to help the organiza-

tion advance its mission of

melanoma research, education

and advocacy. Bill’s melanoma

metastasized in 2009, even

further motivating him to help

newly diagnosed patients

navigate the treatment process.

Bill’s passion for the cause

inspired him to co-sponsor the

incredibly successful Wings of

Hope for Melanoma DC gala,

now in its sixth year. This is just

one of the many ways Bill shows

his dedication to raising money

to fund more research that will

help patients and eventually

lead to a cure for melanoma.

Bill started and built a successful

real estate title and settlement

company, Champion Title. Over

the past 20 years, he has

opened 10 offices and is

currently doing business in over

20 states! Bill says the highlight

of his career has been seeing

his employees grow within

the company.

When he’s not working or

volunteering, Bill and his wife,

Jackie, enjoy spending time

outdoors and playing sports

such as golf and basketball with

their four children: Billy, Danny,

Katie, and Kristen.

Bill Reilly

Looking for a new and

attention-grabbing way to

spread awareness? Shop at the

MRF’s #GetNaked online store!

These fun new pieces encourage

people to #GetNaked in front of

the mirror and take a closer look

at their skin. Each piece is

emblazoned with the provocative

M R F S HOP U PDATE

#GetNakedStoreisOpen!#GetNaked logo, which makes

them a great way to start

conversations about melanoma

and, even better, all proceeds go

to the fight against melanoma!

Give the gift of hope this holiday

season at

shop.melanoma.org!

Written by volunteer Terrilyn Pugnetti

Growing up in Myrtle Beach, SC,

I worshipped the sun. My family

enjoyed being at the beach or

out on a boat and, because my

parents were both teachers, we

were able to play all summer

long. We didn’t use sunscreen

since we are Italian and tan

easily. I always believed in a

“healthy tan” because I would

get compliments wherever I

went. At the age of 15, I took

my first job as a lifeguard and

continued to worship the sun six

days a week from sun-up to

sun-down. I became so addicted

to the sun that I began working

at a tanning salon during the

winter months just so that my

tan would never fade. I loved

making money, but I loved being

in the sun most of all: it gave me

a high. When I noticed a mole

on my left thigh, I began putting

Band-Aids on it and continued

tanning. There was no stopping

me (or so I thought)!

During a routine annual exam, I

asked my doctor about my mole

who immediately referred me to

have it removed. At the

University of CO Health Science

Center, I was diagnosed with

late stage melanoma. I was 25

years old and I felt all alone

being 3,000 miles from my

family. How could I be so

healthy yet completely deny the

most precious part of my body...

my beautiful skin?

The mole was removed, but it

did not look good and at one

point the doctors told me I may

only have months to live.

However, I was very fortunate

and the melanoma did not

metastasize. As a precaution, I

endured four difficult months of

FEATU R E D M R F VOLU NTE E R

TerrilynPugnettiAlpha-Interferon therapy

through self-injections. Now I

take every chance I get to

educate young children and

teens about the importance of

skin protection. I teach 6th

grade and every year my school

celebrates Melanoma Awareness

during the month of May.

Being an MRF Phone Buddy

helps me give back and provide

support to those who need it

now. I am a very good listener

and I am able to remain positive

and help people through a very

difficult time. Being a Phone

Buddy helps me educate myself

and learn of some of the latest

practices, treatments and

research so that I can share

what I know and educate others

about early detection and the

support that is available. This

experience has been very

rewarding. I have met wonderful

people who have had the same

fears, thoughts, feelings, and

triumphs of being a survivor and

it is extremely gratifying to know

that there are others like me

out there!

6

Congressman Charlie Dent and his wife Pam kicked off the evening’s program at the 2nd Annual Wings of Hope for Melanoma Philadelphia Gala on October 28th at the National Constitution Center in Philadelphia, PA.

The Dysplastic Divas from Nashville Skin and Cancer were one of nine dermatological groups who participated in the 4th Annual Music City Miles for Melanoma in Nashville, TN.

In their 5th year fundraising for the MRF, Richie’s Runners ran for 24 hours from Saratoga Springs to Lake Placid, NY, in memory of Richard Lipp, who died from melanoma at the age of 43.

Members of team CURE Ocular Melanoma raised more than $10,000 for the 2nd Annual Miles for Melanoma DC on April 26th.

7

Miles for Melanoma athlete Nicole Serraiocco poses with her husband Carlo and Sugarland musician/fellow athlete Thad Beaty at the IRONMAN World Championships in Kona, HI. Nicole raised over $50,000 for the MRF!

The 2014 Wings of Hope for Melanoma Philadelphia Courage Award recipients. From left to right: T.J. Sharpe, Laura Miller (accepting posthumously for her twin sister, Tara), Brigette Douglass, Jerry Dover, Sarah Weaver and 2014’s award presenter and past award recipient, Julius Rauch.

Beth Castle, founder of Miles for Mike, presents the MRF’s Board Chair, Steve Silverstein, and Executive Director, Tim Turnham, with a check for $25,000.

At the sold out 13th Annual Wings of Hope for Melanoma New York City gala, the MRF’s Executive Director, Tim Turnham (center right) and Gala Chair, David Abrutyn (center left), commemorated the work of two of this year’s awardees: Dr. Mitchell Kline (far left) and Bill Belfiore (far right).

The 8th Annual Miles for Melanoma New Jersey 5k raised over $73,000 and drew nearly 700 participants, including one of the largest teams the MRF has ever had: Team Turner raised more than $9,300 and had an astounding 108 members!

The 3rd Annual Miles for Melanoma Twin Cities raised almost $72,000 and had more than 650 participants, including Hazel (8) and Sam (7) Johnson.

I N TH I S I SS U E

•Patient-CenteredPrograms•PediatricMelanomaSummit•FeaturedBoardMember•FeaturedVolunteer•UpcomingEducationalandFundraisingEvents

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

TheMelanomaResearchFoundation(MRF)isworkingtotransformmelanomafromoneofthedeadliestcancerstooneofthemosttreatable.Learnhow.

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