2013 - National Alopecia Areata Foundation

National Alopecia Areata Foundation
Annual Report
Fiscal Year Ending December 31, 2013
Making
THE
Right Moves
Dear Friends,
The game of chess teaches us that to best a formidable opponent, there must be a marriage of nuanced planning and decisive action. There is no
quick victory; the game cannot be won in a single stroke. It takes consideration, foresight, an ability to weigh the opposition—and yes, a certain
amount of luck. When these elements align, key moves can be made that gradually eliminate obstacles, wrest control of the board, and seize victory.
In 2013, the National Alopecia Areata Foundation made several key moves against a disease that robs too many of us of not only our hair but
our self-confidence and joy in life.
These moves were made in school classrooms and summer ballparks, under the microscopes of laboratories and under the dome of our nation’s
Capitol. We took ever more aggressive gambits in research utilizing those most powerful of game pieces, the Alopecia Areata Treatment Development
Program and the Alopecia Areata Registry, Biobank & Clinical Trials Network. We made deeper forays into guaranteeing government support for
alopecia areata research using our well-chosen knights, the Legislative Liaisons. And the 145 million people affected by alopecia areata proved they
were no pawns, stepping forward in their own defense and demanding, in accord with our Awareness Month theme,“Look at us!”
From the bayous of New Orleans to the moors of Edinburgh, from the beachfront of Miami to the bustle of Manhattan, NAAF met with
researchers and medical professionals to gain and spread scientific knowledge, strengthen ties, and keep alopecia areata at the forefront of clinical
discussions. As further proof that we are playing to win, the Journal of Investigative Dermatology (JID) published the proceedings of NAAF’s most
recent Alopecia Areata Research Summit, From Basepairs to Bedside: Innovations in the Immunology & Clinical Science of Alopecia Areata.
Three significant video projects put the spotlight on alopecia areata, our community, and our research efforts. And we made aggressive moves
in the political sphere, where our Legislative Liaisons made their Washington, DC debut, convincing their congressional representatives to restore
research funding cut by sequestration.
No single move has won the game. But taken together, these moves and others described in the following pages ensure that the ultimate outcome
will be victory. For over three decades, our goal has been nothing less. NAAF has and always will endeavor toward one outcome: telling alopecia
areata, “Checkmate.”
Maureen McGettigan
Chair, Board of Directors, 2013 & 2014
Vicki Kalabokes
President and Chief Executive Officer, 2013
Dory Kranz
President and Chief Executive Officer, 2014
The nation’s leading nonprofit watchdog group, the BBB Wise Giving Alliance, has found that NAAF operates with the utmost integrity,
transparency, and accountability. NAAF is proud to be one of the very few nonprofits (out of the almost 1.5 million nonprofits in the United States)
that meet these strict standards. In addition, NAAF meets all 43 of the standards required for membership in the National Health Council.
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Support
We’re all in this game together.
Every piece is valuable.
That’s why we stand by one another.
Our Annual Conference Inspires and Invigorates . . .
NAAF’s 28th Annual International Family Conference, held in St. Louis,
welcomed over 700 people—including 311 VIPs (first time attendees)—for four
days of fun events, fascinating guest speakers, empowering support sessions,
educational workshops, celebrity appearances, and our most successful Tortoise
& HairTM walk, all under the awe-inspiring Gateway Arch.
We awarded a total of 90 Conference Scholarships enabling people in need to
attend the conference. Since this program was initiated, a total of 1,386
scholarships have been awarded.
We welcomed conference guests
from all over the world! There were
attendees from 39 states, as well as
Algeria, Australia, Canada, Guinea,
New Zealand and Sweden.
Our Online Reach Informs and Educates . . .
The NAAF website provides the latest information on research, support and
resources, programs and events, and much, much more. During 2013 it received
over 3.8 million hits. Go to www.naaf.org to see for yourself what the NAAF
website has to offer!
We leveraged NAAF’s social media presence on Facebook and Twitter to bring you
up-to-the-minute news regarding the alopecia areata community and its activities.
Best of all, you shared your comments and questions, and we loved being able
to interact with you. By the end of 2013, our Facebook page earned 4,000 new
likes for a total of 10,200, and our Twitter feed gained 900 new followers for a
total of 1,880.
NAAF’s monthly electronic newsletter, Beneath the Surface, continued to provide
a quick summary of important information of use to 17,500 readers in the
alopecia areata community.
“Every time I go to a NAAF Conference (this is my third), I learn that
even though I have alopecia areata it doesn’t make me different from
any other kids, teens and adults. I just may wear a wig and not have
the same amount of hair but I am still human and the same.”
— Demeiah Chatfield
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“I feel very confident about myself now. I even took my yearbook photo
without my wig. The conference has changed me—in a good way. I feel
so liberated, it’s great. I can’t wait for next year’s conference!”
Our Multi-faceted Support Empowers and Resonates . . .
NAAF continued its long tradition of providing an abundance of resources to
to help our amazing kids cope with the social and emotional challenges of sudden
unexplained hair loss, as alopecia areata most often manifests first in childhood.
• We provided to 253 families upon request a nine-minute DVD entitled Why My
Hair Falls Out, designed for kids to share with family, friends, and schoolmates to
help them understand how living with alopecia areata may impact a child.
• We mailed a school guide, including a NAAF bibliography of books for kids
with alopecia areata, to parents and teachers in need of this information, which
can’t be found elsewhere.
• We sent out thousands of brochures for parents and kids addressing the social and
emotional challenges of alopecia areata and offering coping strategies.
• We made sure children were welcomed at all support groups; we even had four
support groups just for kids.
• Our Children’s Conference Camp enabled 209
kids ages 5 to 17 to revel in the comfort of
others who are dealing with similar challenges.
• We offered secure and private message boards
for children and teens to share with and learn
from each other.
• We provided helpful information in a kid-friendly
way in a special section of the Alopecia Areata
News entitled KidNet.
• Our Pen/Cyber Pal program attracted 1,381 participants of all ages and
nationalities. It’s a fun and easy way to make a new friend across the globe!
“So thank you! Thank you for giving us the opportunity to attend
the 2013 NAAF Conference! Thank you for helping my family to see we
are not the only family dealing with alopecia areata! Thank you for
helping us to connect to people who are also learning to cope with
alopecia areata! Thank you for helping us to find ways to
educate others! Thank you for everything! Being able to attend the
conference was such a blessing for our family!”
— Danielle Candray
NAAF awarded financial grants from the Ascot Fund to a total
of 93 children, women and men in 2013 so they could purchase
hair prostheses. We also provided 96 ready-made wigs to those
in need. These grants make an incredible difference in the lives
of those affected. A total of 736 people have been aided thanks
to this very special program since
the fund was established in 2004.
The Alopecia Areata Marketplace
connected people with alopecia
areata to hard-to-find and muchneeded products from 53 different
merchants. A wide variety of products were tried and tested to ensure
exceptional quality.
NAAF’s 130 motivated support
volunteers organized local support
groups and provided telephone
support as part of NAAF’s International Support Network, serving 144 cities
worldwide. We celebrate these support volunteers in each quarterly newsletter.
Thousands of individuals and medical professionals
were sent our four primary NAAF brochures
(Alopecia Areata: What You Should Know;
A Parent’s Guide; Helping You Cope; and
From a Child’s Point-of-View). We help those
newly acquainted with alopecia areata as
well as those more familiar with the disease
who are seeking the most up-to-date
information. Additionally, these
informative brochures were
distributed at awareness events and
provided to doctors’ offices.
— The Spaude Family
3
Awareness
AND
Advocacy
Our chessboard ranges from ballparks
to bowling alleys, classrooms to
Congress, St. Louis to cyberspace.
We Strive to Create Awareness and Understanding . . .
We asked our friends, neighbors, co-workers and everyone else who could hear our
voice to “Look at Us!” This was not only the theme of Alopecia Areata Awareness
Month in September, but a year-long affirmation, a rallying call drawing attention
to us from people who may not yet fully see or understand us, but soon will. And
when people understand, they help. Here is how we invited the world to “Look at
Us!” in 2013:
NAAF publicity efforts in 2013 generated alopecia
areata-related stories in dozens of print, radio, television,
and web media publications generating millions of media
impressions. These included CNN, Newsday,
Glamour, The Huffington Post, Dermatology
World, San Diego Living, the
Liverpool Echo, The Palm
Beach Post, The Daily Mail,
Philippine Information Society,
Medical Web Times, KMOVSt. Louis, TheDenverChannel.Com,
WRAL-Raleigh, and SiriusXM Radio.
NAAF took an active role in educating medical professionals about alopecia
areata and the Alopecia Areata Treatment Development Program by hosting
informational exhibits at medical and scientific conferences for key organizations,
including the American Academy of Dermatology, the Dermatology Nurses’
Association, the Society for Investigative Dermatology, American Academy of
Pediatrics, and FasterCures.
We partnered with 16 Major League and 3 Minor
League Baseball teams for 2013’s “Team Up for
Alopecia Areata” campaign during Alopecia Areata
Awareness Month in September, attracting some
320 fans from the alopecia areata community and
spreading awareness to thousands.
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Detroit Pistons power forward
Charlie Villanueva participated in
Meet & Greet events in 14 cities
as part of NAAF’s Charlie’s Angels
program, giving almost 300 fans in
the alopecia areata community a
chance to meet and have their
picture taken alongside the most
famous athlete with alopecia areata.
We made information on alopecia
areata more accessible than ever
with new video projects:
• NAAF produced and unveiled the Alopecia Areata Treatment Development Program
Video, a compelling and informative seven-minute presentation of stories, reflections,
and personal accounts from both lay people and experts who understand and care
about what is needed to help those with alopecia areata. The video, originally
proposed at NAAF’s board meeting in January 2013, illustrates why the Alopecia
Areata Treatment Development Program is so vital to achieving one of NAAF’s
most important goals: finding effective, FDA-approved treatments that restore hair
growth for people affected by alopecia areata. Those who watched the
video on NAAF’s website were encouraged to give their feedback in
a survey designed to measure the film’s overall effectiveness and
gauge its application as both an informational tool and a
stirring document. Most significantly, 93 percent of viewers
surveyed agreed they felt moved by the video and considered it
“accessible” to someone who might be unfamiliar with alopecia
areata. A similar number said they would consider showing the
video at an awareness event or fundraiser. By the end of 2013,
approximately 1,000 people had watched the video on our
website and some 3,000 had viewed it on NAAF’s YouTube
page. Watch it now at www.naaf.org/TDPvideo
•
NAAF Chief Financial Officer Bob Flint gave an
excellent overview of alopecia areata and what
NAAF is doing in the fight for treatments and a
cure in a video produced by The Giving Library.
By the end of 2013, it had been seen by over 500
viewers. Check it out at www.givinglibrary.org.
• In close cooperation with NAAF, the Society of Dermatology Physician Assistants
produced four films providing an overview of alopecia areata, its effect on patients,
and the state of current research. By the end of 2013, these videos attracted over
2,200 viewings. All four can be viewed on www.dermcast.tv.
On August 21, Dr. Marc Glashofer, a dermatologist on NAAF’s Scientific Advisory
Council, educated listeners about alopecia areata on SiriusXM’s Doctor Radio. Two
weeks later Dr. Glashofer and NAAF Communications Director Gary Sherwood
discussed alopecia areata and the Foundation’s efforts as guests on another
SiriusXM program, The Maggie Linton Show.
NAAF was proud to be one of only three organizations
chosen to receive Ella, the bald friend of Mattel’s iconic
Barbie. Mattel also made a generous donation to NAAF
to pay for shipping these dolls to children with alopecia
areata, who overwhelmingly took the dolls to heart. As
one lucky recipient told her parent, “Daddy, she looks
JUST LIKE ME”
Our Advocacy Efforts Are Growing and Expanding . . .
At the National Health Council’s 26th Annual Voluntary Health Leadership
Conference held February 13 to 15 in Ponte Vedra, Florida, Vicki Kalabokes
delivered a presentation in support of the MODDERN Cures Act, illustrating how
this important legislation will accelerate alopecia areata research by promoting
the development of dormant therapies and attendant regulatory protection.
“I felt honored to be taking the message of NAAF and the
alopecia areata community as a whole to the Hill.
Having the opportunity to create awareness and push for the support
of our senators and representatives on key issues impacting our
community was an experience I am proud to have been part of.”
Twenty-seven Alopecia Areata Legislative Liaisons
responded to a February Action Alert urging their
congressperson to defend funding for medical
research so that the U.S. maintain its position
as the world leader in this field by guaranteeing
that the NIH receive an allocation of at least
$32 billion for Fiscal Year 2014, returning to
pre-sequestration levels.
The Alopecia Areata Legislative Liaison program celebrated its first year
anniversary with a victory as Congresswomen Anna Eshoo (D-CA) and
Zoe Lofgren (D-CA) contacted both the Food and Drug Administration (FDA)
and the Centers for Medicare and Medicaid Services (CMS) on behalf of the
alopecia areata community. This came as a direct result of NAAF’s Day on
Capitol Hill, held September 11th. Fourteen Legislative Liaisons from 12 states,
along with NAAF Communications Director Gary Sherwood and Chief
Administrative Officer Jeanné Rappoport, met with the health aides of some
two dozen senators and congressional representatives. The Legislative Liaisons
asked for their lawmakers’ support in advancing alopecia areata research in
three key areas, all critical components of the Alopecia Areata Treatment
Development Program:
1. Support an allocation of $32 billion for the National Institutes of Health (NIH) in
fiscal year 2014 to provide the agency with adequate resources and to offset the
5 percent funding cut NIH took this year due to sequestration. This includes
funding for research of alopecia areata.
2. Support the FDA and encourage the agency to engage alopecia areata patients as
part of its Patient-Focused Drug Development Initiative. This initiative has the
potential to greatly improve development, oversight and access to treatment options
for the alopecia areata community.
3. Request the CMS rewrite current policy to make Medicare benefits available to
patients who require cranial prosthetics as a result of alopecia areata. As it stands
now, Medicare only covers cranial hair prosthetics for “secondary alopecia”
(i.e. hair loss caused by chemotherapy and other temporary reasons) and excludes
alopecia areata.
Continued on page 6
— Deirdre Nero
5
Awareness
AND
Advocacy
Continued from page 5
In concert with other organizations serving people with skin and autoimmune
diseases, NAAF advocated for greater legislative awareness and support of research.
• We were a sponsor of the American Autoimmune Related Diseases Association’s
(AARDA) Congressional Briefing held March 20, 2013, in Washington, DC.
In collaboration with the National Coalition of Autoimmune Patient Groups,
AARDA’s aim was to bring health and policy issues to the attention of U.S.
legislators, highlighting work that is being done in research and the need for
further investigation into environmental triggers of autoimmune disease, the
genetics of autoimmune diseases and why they tend to cluster in families, and
the emotional and financial cost to American families struggling with these
100+ chronic autoimmune diseases.
• NAAF collaborated with other member organizations within the Coalition of
Skin Diseases (CSD), advocating for the importance of skin disease research that
will benefit all of our patient communities. Gary Sherwood and Jeanné Rappoport
met with their CSD partners to discuss goals and strategies while attending the
American Academy of Dermatology Association Legislative
Conference, held September 8–10 in Washington, DC.
The main focus of the conference was a day of advocacy on
Capitol Hill, primarily in support of restoring sequestration
cuts to the NIH via the same allocation described above.
This allocation would provide an additional amount toward new medical research,
including that for alopecia areata. Gary and Jeanné met with the offices of Senators
Dianne Feinstein and Barbara Boxer to explain why NIH funding is so critical to
the cause of finding treatment and a cure.
Senior members of NAAF met in December with high-level representatives
from the NIH to discuss the state of alopecia areata research, its future, and the
role these organizations can play as they identify research synergies and emerging
opportunities. NIH representatives met with NAAF President and CEO
Vicki Kalabokes; Leonard Sperling, MD, from NAAF’s Scientific Advisory
Council; and Richard Gelula, Director of the Alopecia Areata Treatment
Development Program, at the NIH campus in Bethesda, Maryland.
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Awareness on a Local Level is Nothing Short of Outstanding!
We provided updates to our constituents offering the latest information on the
issues affecting them via the Alopecia Areata News, NAAF’s award-winning
newsletter, which is regarded as one of the foremost patient periodicals.
Our annual report won the 2013 APEX Award for Publication
Excellence in the field of Annual Report Writing.
The inaugural “Cheers for cHAIRity: NYC NAAF” was nothing
short of a huge success. Organizers Rob and Margery Goldberg
joined forces with Soho Events NYC to host this topflight
event in New York’s hip Meatpacking District, complete with
cocktails, hors d’oeuvres, DJ, photographer, and silent auction.
All told, the Friday night soiree raised close to $40,000.
Now that’s partying with a purpose!
NAAF received a $5,000 grant thanks
to Becky Hibbs who was chosen out of
more than 60,000 entries from across the
United States as a winner of Mary Kay
Inc.’s One Woman Can™ Global
Makeover Contest. To enter the contest,
Becky submitted a statement about her
passion for alopecia areata awareness, and
what it means to her.
Close to 200 volunteers led 54 events reaching thousands of people and raising
alopecia areata awareness in their communities along with $210,000. Among
these events were the Who Needs Hair talent revue in New York City; the Wiggin’
Out social event in San Diego; the Big Hairy Deal in Neillsville, Wisconsin;
and the 2nd Annual Bowl-a-thon in Houma, Louisiana.
NAAF gratefully acknowledges all of the AWESOME individuals and families
that raised money and spread awareness on our behalf during 2013.
Walks and Runs
Addison Harris Family & Friends
Dirty Mudders Run..................................................FL
Amanda Shannon Family & Friends • 5K Run............PA
Ann Adams Family & Friends • Marathon ...................IL
Brittany Taurisano Family & Friends
Walkathon and Raffle ..............................................NY
Chris Passarella Family & Friends • 5K Run/Walk.......NJ
Deyanne Urbahn Family & Friends • 5K Walkathon..NY
Guru Mathur Family & Friends • 5K Run/Walk ........TX
Jill Hayes Family & Friends • Marathon.......................IL
Kristin Cheeks Family & Friends • 5K Run/Walk .....MD
NAAF Conference • Tortoise & HairTM .....................MO
Nancy O’Brien Family & Friends • 5K Run ..............MA
Rodrigo Gomez Family & Friend
Miami Half Iron Triathlon........................................FL
Samantha Berlin Family & Friends • 5K Run/Walk....NY
Awareness Days and Festivals
Cale Schremp Family & Friends
Awareness Bracelets ................................................MO
Jade Gross Family & Friends • Big Hairy Deal............WI
Juwayne Silmon Family & Friends
Baseball Awareness & Bracelets................................MS
Kiah Lang Family & Friends with Morgan McIlwee
Family & Friends • Rock For Locks .........................WI
Samantha Impson • Awareness Day at School.............CA
Galas
Deb Wolf Family & Friends • Wigsgiving ..................WA
Harrison Goldberg Family & Friends
Cheers for cHAIRity ...............................................NY
Shae Haskins Family & Friends • Aloha Alopecia.......TN
Tara Maazel Family & Friends • Who Needs Hair ......NY
Movie Screenings
Christie Alonso Family & Friends
Baby Let Your Hair Hang Down ............................AL
Margaret Staib Family & Friends
Baby Let Your Hair Hang Down ...........................NY
Bowling Parties
Laura Pellicano Family & Friends ...............................DE
Marie Lirette Family & Friends ...................................LA
Patricia Carter Family & Friends ................................CA
Tuscon AZ Support Group .........................................AZ
Jeans Days
Holy Spirit Regional Catholic School..........................AL
Kim Martino Family & Friends..................................CT
Stephanie & Courtney Whitney..................................KS
Concerts
Ariel Quinn Family & Friends • Music Night.............NY
Caitlin Riley Family & Friends • Who Gives a Hair....MI
Darlenys Rosa Family & Friends • Concert .................NJ
Erin Salisbury Family & Friends • Bluegrass Fest.........SC
Art Fundraisers
Jordan Slack Family & Friends Art & Silent Auction ...WA
Salon Fundraisers
Jimmie Sanders Family & Friends
Bold, Bald & Beautiful ............................................TX
Lucinda Beatty • Day of Beauty..................................CT
Michele Zaret Family & Friends • Blowout-a-Thon ...NY
San Diego Support Group • Spa Day..........................CA
Hats Days
Ann Sansone Family & Friends
Blackrock Elementary School....................................RI
Carly Beiter Family & Friends
Devon Elementary....................................................PA
Restaurant Fundraisers
Chelsea Duhs • Dine at Ruby’s ...................................CA
Cheryl Ann Torner Family & Friends ..........................PA
Kristin Cheeks & Kayla Campbell
Chipotle & Buffalo Wild Wings ............................MD
Susanne O’Connor Family & Friends
Martini’s Matter.......................................................VA
Miscellaneous
Amelia Warner Family & Friends
Free to Be Me Luau Pool Party .................................NJ
Ashley Guzman • Zumbathon .....................................FL
Becky Hibbs • Mary Kay Writing Beauty Contest ......TN
Bonnie Stern Family & Friends • Donation Page........NY
Carlaine Willis Family & Friends
Jewelry Fundraiser ...................................................CA
Cathi Burys • Letter Writing Campaign .....................NY
Claudia Quesada de Carillo • Car Wash .....................CA
Grace Duhs Family & Friends • Lemonade Stand.......CA
Janelle Fleites • Basketball Shoot Out ..........................FL
Maniscalco Family & Friends
Backyard Dance Party..............................................NY
Maria Mahnken Family & Friends
Chocolate Tour..........................................................IL
Mindy Parsons • Fun Day & Garage Sale...................OR
Monica Zink Family & Friends • Donation Page ......MD
Susanna Davies Family & Friends • Casino Night ......CA
Terri Echols • U Paint It .............................................TX
7
Research
Intelligence about a foe
is essential to victory.
Through the Alopecia Areata Treatment Development
Program, NAAF continued the quest to find a viable
alopecia areata treatment and a cure.
We Strategically Drive Research
A series of research summits have played a key role in strategically directing
NAAF’s research investments. Following a successful summit in December 2012,
which led to publication of the proceedings in the Journal of Investigative
Dermatology, NAAF began to plan for the next research summit to be held
December 4 – 5, 2014, in Bethesda, Maryland. Working closely with Medical
and Scientific Co-Chairs Dr. David Norris (University of Colorado Denver),
Dr. Julian Mackay-Wiggan (Columbia University in New York) and
Dr. Jeff Frelinger (University of Arizona), NAAF associates developed an
engaging agenda to bring seasoned experts and bright new minds together to
distill learning from recent advances in autoimmune, skin, hair and related
disease research and chart the path forward. An application was submitted to
the National Institute of Arthritis and Musculoskeletal and Skin Diseases
(NIAMS) for financial support and received the best possible score of 10.
NAAF CEO Vicki Kalabokes and CPO Dory Kranz learned the latest research
acceleration tools and techniques at FasterCures’ fifth Partnering for Cures
meeting held November 3 – 5 in New York City. FasterCures, a center of the
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Milken Institute, is determined to remove barriers to medical progress, and
works to improve the medical research process so that it speeds up the time it
takes to get important new medicines from discovery to patients.
We conducted a strategic review of our Scientific Advisory Council and restructured it into two groups offering separate counsel on 1) basic research and 2)
clinical research. The goal is to foster an open, collaborative system involving all
the critical stakeholders without overly burdening these volunteers who so graciously
contribute their time and expertise. The objective of these two committees, known
as the Basic Research Advisory Council and Clinical Research Advisory Council,
is to have smaller, more-focused groups that can work together more efficiently
to advance the Alopecia Areata Treatment Development Program. Before
restructuring, the NAAF Scientific Advisory Council met and reviewed the progress
of this program. The subcommittees created at the Alopecia Areata Research
Summit in November 2012 reported on their assignments and progress.
On June 28, NAAF convened a Corporate Leadership Council (CLC) meeting
to share recent developments in our understanding of alopecia areata genetics and
immunology that have come about through research driven by the Alopecia Areata
Treatment Development Program. Companies large and small who are interested
in new areas of autoimmune disease treatment and alopecia areata specifically
were invited guests at this meeting. They were interested in participating in
future CLC meetings and taking steps to learn more about alopecia areata.
We Raise the Profile of Alopecia Areata Research to Attract Researchers and Facilitate Collaboration
The prestigious Journal of Investigative Dermatology (JID) published
the proceedings of NAAF’s 2012 Alopecia Areata Research Summit, From
Basepairs to Bedside: Innovations in the Immunology & Clinical Science of
Alopecia Areata, which distilled and articulated the progress made in alopecia
areata research over the previous two years. Publication of the proceedings was
an honor as the JID is widely recognized as a leading voice in dermatologic
research, and only publishes work that has been thoroughly peer-reviewed.
The supplement was distributed to all subscribers of the journal across the
world, spreading the word about new studies and furthering the progress of
alopecia areata research.
The Society of Dermatology Physician Assistants interviewed alopecia
areata researchers and patients during the NAAF Annual Conference to
produce four videos which can be viewed on Dermcast.tv. The four films are
“Treating Alopecia - Jennifer DeFreece - National Alopecia Areata Foundation,”
“Alopecia 101 - Maria Hordinsky MD,” “Treating Alopecia - Matthew Cogan
- National Alopecia Areata Foundation” and “On the National Alopecia
Areata Foundation - Maureen McGettigan.” The Journal of Dermatology
for Physician Assistants also began publishing a series of articles on different
aspects of alopecia areata.
A video on the Alopecia Areata Treatment Development Program was
produced by NAAF to inform and inspire potential partners in research
funding. This compelling and informative seven-minute presentation of
stories, reflections, and personal accounts from lay people and experts
illustrates why the program is vital to
achieving FDA-approved treatments that
restore hair growth for people affected
by alopecia areata.
NAAF participated in the American
Academy of Dermatology (AAD) Annual
Meeting in Miami Beach March 1 – 5 which
featured the following:
• Alopecia Areata was the highlight of the
North American Hair Research Society
Meeting, held in tandem with the AAD.
Rox Anderson, MD, presented all the possible
devices that might be used to treat alopecia
areata. Angela Christiano, PhD, presented
the progress in translational research resulting
from her incredible genetics findings that point to a promising future.
• Several posters and scientific presentations on alopecia areata were given by NAAFfunded researchers and Scientific Advisory Council members. One presentation
focused on new prevalence and incidence data funded through our Alopecia Areata
Treatment Development Program.
• NAAF staff members met with over 10 interested pharmaceutical companies to
promote and partner with the Alopecia Areata Treatment Development Program.
We continue to push them to consider developing a therapy for alopecia areata.
• The Dermatology Foundation presented NAAF’s Founding Chair, Vera H. Price, MD,
with its Lifetime Career Educator Award. This award recognizes academic dermatologists
who have been inspirational teachers and mentors to generations of medical students
and residents.
• The Women’s Dermatologic Society held a Legacy Dinner Honoring NAAF Scientific
Advisory Council Member, Wilma Bergfeld, MD. The event celebrated Dr. Bergfeld’s
legacy as founding president of the society and her immense contributions promoting
women in the medical field.
At the 31st Annual Dermatology Nurses’ Association Convention, held April 4 – 7
in New Orleans, Louisiana, NAAF staffers promoted the Alopecia Areata
Treatment Development Program and discussed partnership opportunities with
various pharmaceutical companies in attendance. NAAF representatives also
provided hundreds of grateful dermatology nurses with alopecia areata patient
education materials.
Continued on page 10
9
Research
Continued from page 9
NAAF representatives promoted hair research and encouraged young investigators to
study alopecia areata at the International Investigative Dermatology Conference held
May 8 –11 in Edinburgh, Scotland. The conference featured over 200 scientific posters
on autoimmunity, immunology, hair, genetics, clinical research, and animal models
related to alopecia areata. Over 20 posters were dedicated solely to alopecia areata
research studies, and the posters related to research funded by NAAF all credited NAAF
for its support. While at the conference, NAAF’s Scientific Advisory Council met to
review the current status of the core uniform alopecia areata clinical trials protocol and
to discuss upcoming clinical trials.
Dr. Marc Glashofer, a dermatologist on NAAF’s Scientific Advisory Council, and
Richard Gelula, our Alopecia Areata Treatment Development Program Director,
attended the 1st Annual Autoimmunity Prevention Summit, held October 17– 20 in
New York. In light of increasing evidence that autoimmune diseases are active before
symptoms begin to show, this meeting was convened to synthesize and advance
efforts to identify and define autoimmunity at the early stages of “genetic risk” and
“autoimmune activation” before the clinical expression of symptoms would lead
someone to seek medical advice. The summit was an opportunity to connect with
researchers focused on preclinical markers for type 1 diabetes and rheumatoid arthritis,
which have genetic similarities to alopecia areata, and to learn about resources like the
Department of Defense Serum Repository, which has proven to be a useful resource
for retrospective studies.
NAAF sponsored the 62nd Annual Montagna Symposium on the Biology of Skin
highlighting pioneering advances in dermatology research that have contributed to other
scientific and medical fields, such as oncology, genetics, autoimmune disease and structural
biology. Dory Kranz, NAAF’s Chief Program Officer, represented NAAF and alopecia
areata at the Montagna Symposium held October 10 – 14 in Stevenson, Washington,
which focused on how light sustains, damages, treats, images, and modifies skin biology.
At this three-day symposium, Dory was able to learn from and network with thought
leaders and young scientists and hear about breakthroughs in imaging techniques that
make it possible to see what is happening in living human skin down as far as the hair
follicle. This may be useful as we begin to test treatments.
10
We Improve the Ecosystem,
to increase Health Insurance
Coverage and Federal
Research Investments
In November, NAAF President and CEO Vicki Kalabokes and CPO
Dory Kranz met with NAAF’s friends at the National Institute of Arthritis
and Muskuloskeletal and Skin Diseases (NIAMS), which is the primary
funder of alopecia areata research within the National Institutes of Health
(NIH). Vicki and Dory participated in the NIAMS Coalition 2013
Outreach and Education Meeting, a day-long meeting with leaders of other
nonprofits like NAAF, where they heard from and gave feedback to key
players within the NIH. These included Dr. Francis Collins, the Director of
NIH, and Dr. Stephen Katz, the Director of NIAMS, as well as many others.
Senior members of NAAF met with high-level representatives from the
NIH Office of Rare Disease Research (ORDR) to discuss the state of
alopecia areata research, its future, and the role these organizations can
play as they identify research synergies and emerging opportunities.
Dr. Stephen Groft, Director of ORDR, Dr. David Eckstein, Deputy
Director of ORDR, and other NIH leaders met with NAAF President
and CEO Vicki Kalabokes; Leonard Sperling, MD, from NAAF’s Scientific
Advisory Council; and Richard Gelula, Director of the Alopecia Areata
Treatment Development Program, at the NIH campus in Bethesda,
Maryland. Vicki, Richard and Maria Hordinsky, MD and Chair of our
Scientific Advisory Council, also attended the National Coalition of
Autoimmune Patient Groups Meeting to advance our treatment agenda
with leaders of the autoimmune disease community.
Legislative Liaisons met personally with members of Congress to advocate
for support in our efforts to increase federal research funding (as described
fully under Advocacy).
We Make Targeted Research Investments
The Alopecia Areata Registry, Biobank & Clinical Trials Network (the Registry)
celebrated its first anniversary of NAAF Funding. It was on April 1, 2012, that
NAAF assumed sole funding and sponsorship of the Registry, which is a gold
mine of information both for our researchers and for those suffering from the
disease. At NAAF’s 28th Annual International Conference, over 100 saliva
samples were collected for the Registry. More data and samples increase the
potential for significant medical breakthroughs.
The Excimer Laser Protocol received pre-approval from an institutional review
board. This board approval of the protocol is a critical early step in the development of a potential treatment. However, progress in launching the Excimer Laser
Clinical Trial, which will assess the efficacy and safety of the 308-nm excimer
laser in the treatment of scalp alopecia areata, has been challenging. We have a
protocol and five sites with trained investigators ready to go, but the study has
been delayed by other requirements. Thankfully, we are navigating
this learning curve in a device trial, which is many times less
expensive than a drug trial. And we believe that NAAF and
alopecia areata research will be better for the time and care we are
taking to do this right. If successful, the use of the excimer laser
could conceivably become the first FDA-approved treatment for
alopecia areata.
We committed to funding research by Ralf Paus, MD of Munster, Germany,
to characterize the receptors of the autoaggressive T-cell clones that are
responsible for alopecia areata by isolating CD8+ T cells from alopecia areata
skin and characterizing their T-cell receptor chain directly in human skin with
alopecia areata lesions. Identification of disease-specific T-cell receptors may
serve as a basis for specific alopecia
areata immunotherapy and may serve as
a prognostic biomarker. If successful,
this could lead to the first causal therapy
of alopecia areata.
On August 15 NAAF investigators met to review and finalize the
Core Uniform Alopecia Areata Clinical Trials Protocol. NAAF
hopes to accomplish two goals with this protocol: 1) to stimulate the
pharmaceutical industry to investigate potential treatments for alopecia areata
by providing a pre-approved uniform protocol, and 2) enable us to judge the
effectiveness of therapies and compare one therapy to another. The core
uniform protocol will be submitted to a central institutional review
board for approval. A carefully designed protocol
is intended to safeguard the health of the patients
as well as answer specific research questions.
11
Research
Targeted Research Investments
of the Alopecia Areata
Treatment Development Program in 2013
CLINICAL RESEARCH INFRASTRUCTURE
Research Project
Purpose
Significance
Alopecia Areata Registry, Biobank & Clinical Trials Network (Registry)
Madeleine Duvic, MD
Joyce Osei, MPH, MHA
MD Anderson Cancer Center, Houston, TX
Ongoing effort to aggregate patient data, biological samples, and a
network of research institutions. At the end of 2013, we had 9,635
first-tier and 3,693 second-tier participants, and five sites in the
clinical trials network
NAAF is the trusted custodian of a centralized database and store of
well-characterized samples related to alopecia areata. We link
clinical-trial-ready sites to the patient community and facilitate clinical
trial enrollment and feedback.
Evaluate risk and cost of study designed to assess the efficacy and safety
of the 308-nm Excimer laser in the treatment of scalp alopecia areata.
Initiate design modifications for smaller initial proof of concept study.
If successful this could be the first FDA-approved treatment for
alopecia areata.
Develop the initial Alopecia Areata Uniform Clinical Study Protocol,
a standardized protocol for future studies that will enable us to judge
the effectiveness of therapies and compare one therapy to another.
A preapproved published protocol template advances clinical studies.
There will be no need for individual investigators to duplicate efforts.
NAAF provided skin and blood samples from the Alopecia Areata
Registry, Biobank & Clinical Trials Network for investigations to
identify genetic biomarkers expressed in alopecia areata as part of the
Alopecia Areata Scalp Biopsy Biomarker Study, which aims to develop
a set of exploratory biomarkers that can later be validated.
A biomarker is important to measure the progress of disease or the
effects of treatment, and will be crucial for monitoring improvements
during clinical trials in alopecia areata.
Excimer Laser Clinical Study
James A. Solomon, MD, PhD
Ameriderm Research, Ormond Beach, FL
Amy McMichael, MD
Wake Forest School of Medicine, Winston-Salem, NC
Cheryl Gustafson, MD
Emory School of Medicine, Atlanta, GA
Uniform Clinical Trial Protocol
James A. Solomon, MD, PhD
Ameriderm Research, Ormond Beach, FL
Natasha Mesinkovska, MD, PhD
Cleveland Clinic, Cleveland, OH
Biomarker Study
Angela Christiano, PhD
Ali Jabbari, MD, PhD
Columbia University, NY
12
DISCOVERING TARGETS AND TESTING POTENTIAL TREATMENT OR CURE HYPOTHESES
Research Project
Purpose
Significance
Characterize T-Cell Receptor Clones and Identify Related Targets
Ralf Paus, MD
University of Münster, Münster, Germany
Characterize the receptors of the autoaggressive T-cell clones that are
responsible for alopecia areata by isolating CD8+ T cells from alopecia
areata skin and characterizing their T-cell receptor (TCR) chain
directly in human skin with alopecia areata lesions.
This may lead to selective eliminatation of autoaggressive CD8+ T-cell
clones and to identification, in a follow-up project, of the self-autoantigens
that trigger the attack on the hair follicles and may serve as a basis
for alopecia areata immunotherapy and prognostic biomarker(s).
Investigating the potential for cells that produce the enzyme IDO to
inhibit inflammation and hair loss in an alopecia areata mouse model.
Results show the injection of IDO-producing skin cell therapy
suppresses the autoimmune response, preventing the progression of
alopecia areata. Eighty percent of control mice acquired alopecia areata
while none of the IDO cell therapy group was affected.
Skin Cell Therapy Study
Aziz Ghahary, MD
University of British Columbia, Canada
This data was used to apply for a grant from the Canadian Institute of Health Research to conduct more mechanistic studies
and eventually a pilot clinical trial. A grant of $100,000 for two years was received.
Parathyroid Hormone Therapy Study
Robert Gensure, MD, PhD
Tulasi Ponnapakkem, PhD
Ranjitha Katikaneni, MBBS
Test the efficacy of PTH-CBD, a compound that stimulates the hair
cycle, in stimulating hair growth in the C3H/HeJ engrafted mouse
model of alopecia areata.
The final report shows PTH-CBD is a promising therapy for alopecia
areata, particularly in conjunction with a mild immune suppressant,
such as hydrocortisone cream.
Sequence DNA, create libraries and look for candidate targets in
alopecia areata blood samples from the Registry. Registry samples
were processed at Columbia University and sent to Dr. Dai in
November 2013. Dr. Dai will have results to share soon.
This study may identify what the immune system is attacking that
results in alopecia areata and point to possible therapy approaches to
block the destruction of hair follicles.
Children’s Hospital at Montefiore, Bronx, New York
Indentify Antibody Targets
Daisy Dai, PhD
University of Colorado, Denver
13
Statement of Activities for the Year Ended
Statement of Financial Position
December 31, 2013
December 31, 2013
OPERATING REVENUES
Donations – general
Donations – stock and major donors
Restricted grants and donations
Conference
Awareness campaign and special events
Newsletter and brochures
Alopecia Areata market place
Interest and dividend income
Net realized and unrealized gains on marketable securities
Net assets released from restrictions
Total operating revenues
OPERATING EXPENSES
UNRESTRICTED
$496,398
225,637
–
200,661
208,397
19,326
9,902
86,749
282,010
669,814
2,198,894
UNRESTRICTED
Program services:
Research
Education and support
$789,347
1,001,862
Supportive services:
Fundraising
Management and general
Total operating expenses
TEMPORARILY
RESTRICTED
$
–
–
219,283
12,650
1,757
9,750
–
–
–
(669,814)
(426,374)
TEMPORARILY
RESTRICTED
$496,398
225,637
219,283
213,311
210,154
29,076
9,902
86,749
282,010
–
1,772,520
2013 TOTAL
–
–
$789,347
1,001,862
154,369
114,653
2,060,231
–
–
–
154,369
114,653
2,060,231
Change in net assets from operations
138,663
(426,374)
(287,711)
Nonoperating revenues:
Treatment Development Fund
Total nonoperating reveunes
–
–
930,000
930,000
930,000
930,000
138,663
944,036
503,626
2,708,703
642,289
3,652,739
1,082,699
3,212,329
4,295,028
Change in net assets
Net assets, beginning of period
Net assets, end of period
$
2013 TOTAL
ASSETS
2013
Current assets:
Cash and cash equivalents
Marketable securities
Accounts receivable
Prepaid expenses and other current assets
Total current assets
$931,280
3,234,113
26,981
119,021
4,311,395
Fixed assets, net of accumulated depreciation
Total assets
8,124
$4,319,519
LIABILITIES AND NET ASSETS
2013
Current liabilities:
Accounts payable
Accrued vacation payable
Total current liabilities
$2,534
21,957
24,491
Net assets:
Unrestricted
Temporarily restricted
Total net assets
1,082,699
3,212,329
4,295,028
Total liabilities and net assets
$4,319,519
Income for Fiscal Years 1981-2013
1,800,000
1,600,000
1,400,000
1,200,000
1,000,000
Spending Percentage
800,000
2013
2011
2009
2007
2005
2003
2001
1999
1997
1995
1993
1991
1989
0
1987
200,000
1985
(Support, Research
and Awareness)
400,000
1983
87 % Program
6 % Management
600,000
1981
7 % Fundraising
The Statement of Financial Position of the National Alopecia Areata Foundation as of December 31, 2013,
was audited by R. J. Riccardi, Certified Public Accountant. A copy of the complete report, including
notes, is available for public review from the National Alopecia Areata Foundation, 65 Mitchell Boulevard,
Suite 200B, San Rafael, CA 94903, or on the website www.naaf.org.
14
Individual, Foundation,
Corporate and Government
Support 2013
Donors to NAAF provide critical financial
support and represent a growing community
that have allowed us to expand our support
and education programs and drive research to
find a treatment. Donors also strengthen us
by introducing NAAF to their communities.
We thank you for your support.
January 1, 2012 –
December 31, 2013
Editor’s note: Some of the donors listed raised all
of the money for their donation, or a portion of it,
by fundraising.
DIAMOND BENEFACTORS
—$50,000 AND ABOVE
Anonymous
Robert & Ana Flint
Vicki Kalabokes
Maureen McGettigan
Wendy & Brian Ter Haar Family & Friends
Foundations and Organizations
Daniel and Janet Mordecai Foundation,
Wilmington, DE
Sunshine Charitable Foundation,
Lake Forest, IL
GOLD BENEFACTORS
—$25,000 to $49,999
Maria Beckett
Margery, Rob & Harrison Goldberg
Family & Friends
Jeffrey & Jenny Kelter
Debora & Luis Pellicano Family & Friends
Allison Waggoner
Foundations and Organizations
NAAF Tortoise & HairTM, St. Louis, MO
The Fridolin Charitable Trust,
New York, NY
Laffey-McHugh Foundation,
Wilmington, DE
SILVER BENEFACTORS
—$10,000 to $24,999
Samantha Berlin Family & Friends
Caroline & David Brown
Stephen Chaletzky & Eleanor Peters
Bernie & Cheryl Fineman
Dr. Gary Gordon & Marilyn Hirsch
Donna & Matt Hakim
Ann S. Hedges
Josh Lang Family & Friends
Gwen & Hoy Lanning Jr.
Lisa & Brad McIlwee Family & Friends
Lawrence & Sandra Small
Julia & William Van Domelen
Foundations and Organizations
Give Back Brands Foundation,
Pebble Beach, CA
GRAND BENEFACTORS
—$5,000 to $9,999
Anonymous
Dr. Rex & Johnnie Amonette
Harris & Helen Barer
Jay & Peggy Bokulic
Peg & Ed Breslow
Mike & Janis Chapman
Kristin Cheeks & Kayla Campbell
Family & Friends
Ernest & Elizabeth DeCarlo
Warren & Jinhong Deitch
Jim & Carla Flug
Thomas & Marian Gervasi
Judith Glick
Marcia Grimm
Ashley Guzman Family & Friends
Rebecca Hibbs
Philip & Peggy Holland
Bruce & Rebecca Hollinger
Tara Maazel Family & Friends
Nancy & Phil Maniscalco
Family & Friends
Alan & Kathy Pallie
Kimberly & Lou Passarealla
Family & Friends
Erin & Thomas Salisbury Family & Friends
Rina Shinoda
Liliana & Lee Siegelson
Tene & Juwayne Silmon Family & Friends
Sheri Siskin Family & Friends
Ranjit & Rupal Thaker
Deyanne Urbahn Family & Friends
Krista & Chris Valluzzo
Mary & Ed Wojtowicz
In memory of
Kathryn Stamulis Brandy
Businesses
Downtown Chiropractic, New York, NY
E & J Gallo Winery, Modesto, CA
Freedom Wigs Ltd., Dunedin, New Zealand
Johnson & Johnson, Morris Plains, NJ
Mary Kay, Inc., Addison, TX
Murray Hill Chiropractic, New York, NY
Spencer Forrest, Inc., Los Angeles, CA
Xenoport, Santa Clara, CA
Foundations and Organizations
Barry H Glick Charitable Foundation,
Wanaque, NJ
Bessemer Trust, New York, NY
Delaware Support Group,
Wilmington, DE
Wells Fargo Foundation,
Santa Monica, CA
Maxine & Jack Zarrow Family Foundation,
Tulsa, OK
MAJOR BENEFACTORS
—$2,500 to $4,999
Cynthia & Woody Andrews
Deena Beckett
Carly Beiter Family & Friends
Andrea & Robert Belford
Claire Chandler
Alysa Dearborn
Fred Levin & Leslie Dumont
Allison Dunlop
John Foren
Arlene & Richard Glenn
David & Ami Handler
Michael Kahn
Tom & Sharon Kelley
Noel Kratzmann
Guru Mathur Family & Friends
Marvin E. Nevins
Nancy O’Brien Family & Friends
Kate Paley
Michele & John Pastorius
Chris & Lisa Ann Pizzo
Jack Porter
Sidney & Susan Rubenstein
Mrs. Patricia & Dr. Joseph Russ
Tera Sakowski
Nicole & Wayne Schremp
Amanda Shannon –Verrengia
Family & Friends
Margaret & Andrew Staib Family & Friends
Patty Tager & Rami Geffner
Josh Tenuta
Amelia & Michael Warner Family & Friends
Camille Weas Family & Friends
Deborah Wolf Family & Friends
Businesses
Accredited Dermatology, Toms River, NJ
Back of the Pack Productions,
Sturbridge, MA
Headcovers Unlimited, Inc.,
League City, TX
National Basketball Association,
New York, NY
Taglich Brothers Inc., Huntington, NY
Foundations and Organizations
Alben F Bates & Clara G Bates,
Foundation, Elmhurst, IL
Foren Family Foundation, Warren, MI
NAAF Team Up for Baseball
The Bob and Hanna Nevins Family Fund,
Naples, FL
BENEFACTORS
—$1,000 to $2,499
Anonymous
Nancy Polley Aibel
Annabel Abrams
Erin & Matthew Allen
Karen Annis & Mike Dazy
Krista Bailey
Lindy Barrow
David Bartash
Marion Bauer
Laura Bivins
Nancy Black
Doug & Denise Borglund
John Botti
Mark Bottone
Linda & Paul Brady
Susan & Steven Burlingame
Cathi Burys Family & Friends
Helen & Victor Castillo
Christen Chambers
Jim & Marilyn Cook
Fred & Nancy Cox
Bradley Curtis
Patricia Davidson
Susanna Davies Family & Friends
Brian & Ann DeMarzo
Dr. Richard Dosek
Laura & Stan Drahos
Libby & John Erickson
Shaila & Karl Fernandes
Katie Fitzgerald
Bill & Lori Frain
Vinci & Ben Fujihara
Brenden & Jennifer Garvey
Erica Gibson
Dr. Marc & Alison Glashofer
Jeffrey Goins & Leo Frappier
Wendy & Brian Gorgacz Family & Friends
James & Darlene Graham
Andrew & Eleanor Grant
Lisa & Julian Grant
Nora & Madison Grose
Madeline Gross
Marcia & Jerry Gross Family & Friends
Carmen Hamza Family & Friends
Earl & Kay Harbaugh
Debbie & Rich Harris
Jill & Timothy Hayes Family & Friends
Juan He
Benjamin Henry
Michele Herbst
Amanda & Scott Hicks
Virginia & David Hilyard
Keith & Liz Hoffman
Amy & Brian Hogan
Barbara & Paul Jacoby
Lauren Johnson
Ronald Jorgensen
Ofer Kariv
Despina & Brian Keegan
Peter & Karen Kensicki
Dr. Lloyd E. King, Jr.
Virginia & Robert Kirkwood
Andrea & Jerry Knutson
Sue & Gary Kostecki
Jeremy Kramer & Becca Davies
Murali Krishna & Rina Sharma
Dr. Gerald Krueger
April Leazer
Joan & Richard Lipack
Jennifer & Emilee Lockwood-Teets
Mary Longsine
Susan MacMillan
Michael & Lise Maddux
Peter & Debby Magowan
Elene & Keith Mahnken
Brenda Malcolm
Jason Malinowski
Stewart & Barbara Mandell
Marie & Thomas Mason
Nancy Matthews
Stephen & Judith McDonald
Marie & Terrell McElheny
Marcelo Melendez Ruiz
Edward, Ava & Jordan Mendelson
Lanny Menendez
Kelly Mertes
Alex Mishos
Charlotte & Brian Mitchell
Anthony & Bonnie Montcalmo
T J Morris
Michael & Christine Moscato
Rose Moskowitz
Gary & Camie Murphy
Debbie Muscatel
Mindy Myers
Vanessa Navarroa
Deirdre Nero Family & Friends
Lesley Nettles
Tom & Pam Nix
Kathy Pauli
Steven Perricone
Emily & Todd Post
Dr. Vera H Price
Melissa & Mike Puccini Family & Friends
Ariel & Joe Quinn Family & Friends
Donna Radford
Katrina Redmond Family & Friends
Allen & Sidney Rishe
Jane & Paul Rittmaster
Phyllis & Sidney Rodbell
Stacy & Todd Rodewald
Liset Rosario
Tom & Terri Rossi
Lisa & David Sakhai
Michael & Barbara Scharf
Collins & Gail Seitz
Jordan Slack Family & Friends
Eileen Smyers
Kim & Bill Snyder
Jerry & Janet Solomon
David Solomons
William H Soskin
15
Juliann Sousa
Dr. Timothy Stanford & Family
Nancy Stark & Stanley Iezman
Bonnie & Scott Stern Family & Friends
Sandra & Bruce Swanson
Aileen & Kirt Switzer
Dr. Robert, Holly & Nicole Tassin
Lisa, Daniel & Brittany Taurisano
Family & Friends
Amber Tebockhorst
Premji Thyagarajan & Sangeetha Sampath
Family & Friends
Glenn & Michelle Traeger
Leo Tress
Jennifer & Mark Trinko
Leonard Ulan
Richard & Lisa Ullman
Becky Umhofer
Cory Wanatick
Greg & Michelle Ward
Bryant & Sharron Watts
Nancy & Doug Weas
Thomas & Carolyn Werner
Melanie & Mark Whitmore
Christopher & Julie Wiley
Tom & Molly Williams
Darlene Wisecup
Frank Yanez
Michele Zaret Family & Friends
Monica & Andrew Zink Family & Friends
Businesses
Al & Alma’s, Mound, MN
C & K Healing Touch, New York, NY
CAMPAT Machine Tool, Inc., Plano TX
Capri School of Hair Design, Nanuet, NY
Clifton, Larson Allen, LLP,
Minneapolis, MN
Colorado Rockies Baseball Club,
Denver, CO
DermMatch, Inc., Sarasota, FL
GM Farms, Latah, WA
Horizon Wellness Group, Hicksville, NY
IBM, Endicott, NY
Lori’s Wigsite, Coconut Creek, FL
Perfect Health Solutions
Pete Colla Auto Wholesale, Greenfield, WI
Rangers Baseball LLC, Arlington, TX
Tudor Risk Services, Woburn, MA
Foundations and Organizations
Amvets Post 172, Fairfield, PA
Arkay Foundation, Berkeley, CA
Dr. Ray H Rosenman Living Trust,
San Francisco, CA
Junior League of San Diego, San Diego, CA
Kirkland & Ellis Foundation, Chicago, IL
The Bartash Foundation, New York, NY
The Drescher Foundation, Bethesda, MD
The Grant Family Fund, Galveston, TX
M J Whitmore Family Trust,
Las Vegas, NV
16
SPONSORS
—$500 to $999
Dr. Harry Agress, Jr.
Lindsay Allen
Barbara Amspoker
Ken & Jennifer Anderson Family & Friends
Donna Astor-Lazarus
Dalia Bardi
Cynthia & Richard Bernard
Susanna & Philip Block
Ramona Bonilla
Sonya & John Bowman
Theresa Bronson
Beth & Jim Burger
Robert & Sharon Caldwell
Krista & Cassidy Campau
Lynn & Richard Capraro
Tracey Casey-Arnold
Mary & Anthony Cefalu
John Chapin
Woo Chan Cho
Karl Christiansen
Lisa & Gene Ciancio
Mary & Joseph Cilibrasi
Leo Aflalo Cohen
Robert & Barbara Cohen
Dr. Beth Colombe
Dr. Anthony & Shirley Costrini
Shirley Cummings
Daphne Cunnington
Ian & Matilda Dalziel
Rozina Damani
Leonard & Carolyn Dariano
Juanita De La Riva
Hochi De Los Santos
Karen & Michael Dermo
Rosa & Richard Dest
David & Lynn Dickens
Randy Dooley
Nenita Dudley
Irene L. Dyer
Kathleen & Ed Edwards
Lisa & Kirk Emiliani
Josh Evans
Jennifer & John Fahey
Dr. Steve Feldman
Daniel Fink
Ralph Fiorentino
Wendy Fiser
Lorraine Fowler
Maureen & David Frail Family & Friends
Pamela Fromhertz
Dr. John & Patricia Garofalo
Lindsay Geyer & Jon Inge
Barbara & James Gilligan
German Godoy
Diane & Bob Goon
Linda & Leo Gordon
Barbara & Robert Griffith
Alice Gross
Robert & Pat Gruttadauria
Ernest Guenzburger & Susan Rubenstein
Sally & Stephen Harr
Christy & Daniel Harris Family & Friends
Andrea & William Heaton
Jason Henson
Mary & Steve Hieronymus
Megan Himan
Sheri Holder
Dr. Jean Holland
Dr. Maria Hordinsky
Cherie & Wayne Hubbell
Brent & Rebecca Huckert
Paul & Patti Jablonski
Carmen Jackson
Stephen Jacobson
Ellen & Steven Jaroslovsky
Doris Johnson
Mary & RL Johnson
Neil Johnson
Catalina Knutson
Linda & David Kolifrath
Raymond Kwong
Christine & Philip Lagana
Dr. Kathy Laing
Dean Leffelman
Tamara Levin
Irving & Lenore Levine
Leonard Levine
Shirley Levitt
Gail Limmer
Marie Lirette Family & Friends
Steve Luparello
Celeste Lutrario
Dietlinde Maazel
Carol & Edward MacKowiak
Julie & Ben Maderazo
Frank & Marie Marino
Carla Matthews
Ruthie Mayfield
Maggie McBennett
Betty McIlwee
Elizabeth & Gordon McNabb
David & Sue Mertes
Kate Metzler
John Miller& Kathie Kinsella
Roberta Miller
Jeffrey S Mitzner
Stephen & Marsha Mock
Darcy & Stephen Morrissette
Scott Mroz & Claudia Held
Audrey Nevins
Dr. Elise Olsen
Santiago Ortega
Joy Ott
Kathryn Page
Robert & Jean Paine
Mark & Karen Peoples
Edward Pollock
Thomas & Virginia Pollock
Connie & Dennis Post
Craig & Amy Powell
Kelly Pratt
Alice Price
Nicholas & Susan Pritzer
Regina S Raftis
John & Diane Rakocy
Todd Ramirez
Ramona Elke Reule
Caitlin Riley Family & Friends
Steve & Cyndi Roach
Janis & Jimmy Roberts
Darlenys Rosa Family & Friends
Donna & Benjamin Rosen
Estelle & Norman Rosen
Kenneth Satir
Brian & Lynn Schaezler
Lynn Schott
Emmanuel Sergi
Patti & David Serna
Gretchen Shorkey
Christopher Skinner
John & Deb Socks
Dr. Jay Tendler
Susan Hart Thompson
Amy & Ira Waldman
Richard Waldman
Debbie & Neal Wasserman
Leslie Watson & Roger Smith
Stephanie Whitney Family & Friends
Edith & Kawin Wilairat
Carlaine Willis Family & Friends
Stephanie Wilson
Jan Wolf
Susan & Vincent Wong
Ruth Ann Wood
Martha Worthy
June Zhao
Businesses
Advancing Innovation in Dermatology.
Mendham, NJ
Baltimore Orioles, Pikesville, MD
Bowl South of Louisiana, Inc., Houma, LA
Capital Group Companies Charitable
Foundation, Los Angeles, CA
Community Affairs, E & J Gallo Winery,
Modesto, CA
DRD Medical, PC, New York, NY
Employee Community Fund of Boeing,
Chicago, IL
Enerpace Inc., Elmhurst, IL
Frederic W. Cook & Co., Inc.,
New York, NY
Godiva Secret Wigs, Inc.,
Woodland Hills, CA
Happy Hills Campground, Hancock, MD
Husch Blackwell, Kansas City, KS
Jim Shorkey Auto Group, Irwin, PA
Joe Rizza Porsche, Orland Park, IL
Laing & Dimick Dermatology,
Ann Arbor, MI
Levi, Ray & Shoup, Inc., Springfield, IL
Lucinda’s Hair, Cheshire, CT
M & F Gauge and Speciality Co.,
Brownwood, TX
Malibu & Vine, Malibu, CA
Metro Ford, Schnectady, NY
New Life Hair, Burr Ridge, IL
Small Planet Contracting Ltd,
Sydney, BC, Canada
Summers Laboratories, Collegeville, PA
Wolfe.com, LLC, Pittsburgh, PA
Foundations and Organizations
The Benjamin M. Rosen Family
Foundation, New York, NY
The Community Foundation, Albany, NY
Daisy Soros Family Trust, New York, NY
Heartland High School, Henderson, NV
Jewish Community Foundation,
Cherry Hill, NJ
North Iowa Area Community College,
Mason City, IA
The Victor & Esther Rozen Family
Foundation, Johnson City, NY
Virginia S & Michael A Halloran Fund,
Novato, CA
Youth 2 Youth Helping Youth Fund,
Albany, NY
Woodlands Academy of the Sacred Heart,
Lake Forest, IL
GRAND PATRONS
—$250 to $499
Donald & Mary Lynne Able
Dr. Susan Albert
Sandra & Steve Allen
Christie & Marilyn Alonso
Brandon Amancio
Jon & Kathleen Andera
Bob & Roxan Anderes
Dean & Carolyn Anderson
Maricel Baetiong
Jim & Lucy Baker
Tamra & Rick Baldini
Brandon, Amey & Addison Barrett
Marguerite Bartlett
Rosa & Annamarie Basile
Kevin Beach
Olga Benda
Michael & Amy Bernabeo
Fran Blaustein
Ray & Betsy Braun
Joyce Brehm
Margaret & Denis Brennan
Valerie Brown
Susan Burrough
Sondra & Andrew Busch
Stuart & Lowen Bush
Dennis & Catherine Bye
Laurie & Robert Byren
Michael & Michelle Cacici
John Calvarese
Laurel & John Campbell
Ralph Cann, III
Thomas Catalano
Helen Cerulli
Olisa Chakraboty
Donald & Patricia Chambers
Michael Chetlock
Susan Christiansen
Philip & Jeanette Cinelli
Nancy & Bob Clark
Raguel Clayton
Susan & Roy Cleveland
Mary Lou Colpoys-Wynne
Art Cooper
Stephen & Gayle Corbin
Irene & Philip Crosby
Nelson & Carmen Cuesta
Mary Curry
Jamini Vincent Davies
Ralph & Jean DeNunzio
Donald Deines
Celeste Descoteaux
Karen Dintino
David & Barbara Dobrinen
Mark & Laura DuFresne
Tracy & Craig Duhs Family & Friends
Keith Dunlap
Barbara & Walter Echo
Terri Echols Family & Friends
Don, Cathy & Heather Ewan
Margaret & Ignatius Fadanelli
Mohammed Faizan
Crystal Feliciano
Luann Firestein
Bernardo Fleischer Ramras
Anthony & Catherine Fusco
William & Katherine Fussinger
Julia Gaare
Alice Gao
Jules & Karen Gardner
Kathy & Lee Gause
Amy & Kyle Gay
Susan Nigro Gelsomino
Charon Gilchrist
Gary & Doreen Gittings
Susan & Mark Goldhaber
Kent & Julia Goodman
Ann & Ed Graham
Craig Grassi
Jeff & Sherene Gravatte
Kathleen & Daniel Groszkiewicz
Thomas Halloran
Rebecca Ahrens Halverson
Lauri Hammer
Barbara Hansen
Drs. Lizzie & Sampson Harrell
Carol & Timothy Hart
Rachel Hays
Barbara Henson
Elizabeth Hicks
Cindy Holt
Steven & Sharon Honeywell
Daniel Horgan
Ann Horodnick
Danielle Howe
Gerald A Hulbert
Gail Johnson
Jeff Jordan
Nicole Jundanian
Dr. Leonard Kaplan
Virginia & Myron Karki
Linda Keenan
Matt Kelley
Kevin & Lindy Kinnan
Charli Kirk
Joanne Knapp
Harold Koessner
Kristin Koliada
David & Carolyn Kordt
Sarandis Kouzouglidis
Leena Krasno
Poplin Kroese
Michaela Kyzekova
Michael & Keren Latzer
Jennifer Laurelli
Frances & Robert Lawrence
Lucinda Lee
Shelli & Robert Leiner
Gina & Eugene Levinson
Katie Lewallen
Caroline Lewis
Karla & Mike Lewis
Andrea & Steve Lipack
Jean Lonie
Frances Lorenzo & Michael DelValle
Elizabeth & Winn Maddrey
J. Michael & Lori Maher
Steve Malman
Susan & Michael Mandell
Luke Mangal
Anne Mantsios
Cathy & Ross Manzo
Kim & Thomas Martino Family
& Friends
Yvonne Massey
Carol Matson
Cassandra Maziarka
Victoria McCloskey
Robert & Maureen McDonald
Bridget & Robert McGowen
Denise & Michael McKeigan
Claire McLean
Melissa McNeil
Robert & Jean Meyer
Christie & John Miller
Cristy & Lillian Miller
Dr. Lawrence Miller
Matthew Mitcheltree
Ahman Moini
Mary Ann & Monte Monson
Carolyn Ann & Dr. John Moody
Jane Moore
Stephanie Morales
Lydia Morehead
Douglas & Allyson Moyal
Chris Murphy
Dottie & Leon Myers
Tony Myers
Karen Nagle
Patricia Nasuti
Justyna Natkaniee
Yvonne Nieves
Jennifer Nordstrom Family & Friends
Suzanne O’Connor Family & Friends
Sandra & Terence O’Hara
Heidi Odmark
Dr. Cornelius Olcott
Larry Overley
Dr. Mark Paden
Sharon Padgett
Peg & Jeff Padnos
Amy Palmer
Adam Pariante
Priyank Patel
Kathleen & John Paulsen
Steven Persson
Adrienne Petras
Danette & Scott Post
Paul Prairie
Lorraine & Michael Prete
Ruth Proller
Tom Pruett
Patricia Pugliese
Ludovica Purini
Cindy & Brian Quello
Claudia Quezada de Carrillo
Family & Friends
Phillip & Bonnie Rabideau
Mary & Phil Raimondo
Adam Michael Randall
Bruno & Isolde Reule
David Ridell
Marie Rider
Beth Roberts
Dr. Douglas N Robins
Tracey Rogers
Evelyn Rosa
Tricia & John Ross
Tracy & James Royal
Laura Runyen-Janecky
John Rupprecht
Jimmie Sanders Family & Friends
Julie Sarton
Tom & Deb Schadt
Kurt Schmid
Tema & Lenny Schrage
Betsy & Robert Schwartz
Martin Setler
Randi Settleman
Lena Shabo
Sally Sheahan
Bob Shumski
Robin & Cameron Signorelli
Stephen & Jane Silk
Roxie & James Simmons
Winifred & Victor Sirbu
Stacy & Barry Sklar
Therese & James Smith
Wilbur & Grace Ann Smith
Victor & Trino Soder
Lisa & Roger Sorino
Amber Sralla
Kathryn & Stephen Starke
Ann Marie & Ken Steele
Paulette Steffa
Joseph Stein
Dr. Kurt S Stenn
Julie Stokes
Robin & Joseph Straka
Joe Strapac
Jon Sugar & Nancy Barbas
Dr. Carol Tabak
Tim Tabler
Todd & Trista Thomas
Cheryl Ann Torner Family & Friends
Ottilie & Robert Tracy
Hal & Sherry Traver
Michael Truax
Linda Tygert-Lillard
Matthew Uyttendaele
Michele Von Plato
Fred Wahl
Sandra & Stanford Warshawsky
Bruce Watkins
Linda & James Wenzinger
Pamela Whelan
Jenny White
Michele & Ronald White
Dr. John Whitley, Jr.
Brittney Whitmore
Susan Wiley
Michelle & Fred Williams
Asuncion & Calvin Wong
Sean & Shannon Yarrnell
Cal Yokomijo
Cathy & Ronnie Young
Dr. Eva Youshock
Mark & Elizabeth Zimmerman
Businesses
4 Women, Saratoga FL.
Accelerated Sports Therapy & Fitness,
Plymouth, MN
Atlantis Cleaning Company,
Newport Beach, CA
Beckley’s Camping Center, Thurmont, MD
BioStorage Technologies, Inc.,
Indianapolis, IN
Burns & Levinson, Boston, MA
Butler Tire South Side, Inc., Frederick, MD
Canton Discount Drugs, Canton, MS
Cecil Barrett Crane Inspection,
Oklahoma City, OK
Emmitsburg Veterinary Hospital,
Emmitsburg, MD
Fuller Hair, Inc., Langdon, NH
Great Lakes Dermatology, Racine, WI
Interclypse, Hanover, MD
Lexington International, LLC,
Boca Raton, FL
McGregor & Sons, Hancock, WI
Mississippi Discount Drugs, Canton, MS
Mondo Baldo, Atlanta, GA
Nero Immigration Law, Coral Gables, FL
New Line Electric, LLC, Westminster, MD
Patterson Fan Company, Blythewood, SC
Precision Door Services,
Menomonee Falls, WI
Pura Vida Bracelets, La Jolla, CA
RP Builders Group, New York, NY
Rollins-PCI Construction, Inc.,
Mt. Airy, MD
SKZ, LLC, Milwaukee, WI
Sherwin Industries, Milwaukee, WI
Stamp Me Fabulous,
Huntington Beach, CA
Texas Rangers Baseball Club, Arlington, TX
Texas U Can Paint, Southlake, TX
Tina M Reed Orthodontics, Inc.,
Pittsburg, PA
Tint & Sound, Frederick, MD
Trammell Transfer LLC, Frederick, MD
Twin Ridge Collision Center,
Mt. Airy, MD
Union Pacific, Washington, DC
United Health Group, Tacoma, WA
Valassis Giving Committee, Livonia, MI
West America Bank, San Rafael, CA
William Street Foot Care, New York, NY
Wynner Group, Inc./Volluma,
Heidelberg, ON, Canada
Xtreme Technologies Group,
Mt. Laurel, NJ
Foundations and Organizations
Blackrock Elementary School,
Coventry, RI
Devon Elementary School, Devon, PA
Downingtown, Area School District,
Downingtown, PA
Green Hills Lions Club, Wilmington, DE
Holy Spirit Regional Catholic School,
Huntsville, AL
M Herskovitz Charity Foundation,
King of Prussia, PA
Marlins Foundation, Miami, FL
Phoenix Support Group, Phoenix, AZ
Rebel Golf League, Grafton, OH
Rhea Tabak Living Trust, Burlingame, CA
Robert J & Frances V Lawrence
Foundation, Chevy Chase, MD
San Francisco Support Group,
San Francisco, CA
We are grateful to all of our donors. The significant portion of gifts under $250 represent an essential source of support to NAAF. We would recognize each of those donors individually here space permitting! Thank you.
17
Mission
The National Alopecia Areata Foundation (NAAF)
supports research to find a cure or acceptable treatment
for alopecia areata, supports those with the disease,
and educates the public about alopecia areata.
National Alopecia Areata Foundation
2013 Board of Directors
National Alopecia Areata Foundation
2013 Key Staff
Maureen McGettigan, Chair
Senior Account Executive
Drug Development Company
Flourtown, Pennsylvania
Vicki Kalabokes
President and Chief Executive Officer
Robert Flint, Chief Financial Officer
Retired
Houston, Texas
Hoy Lanning Jr, Secretary
Business Owner
Wadesboro, North Carolina
Maria Beckett
Business Owner
Columbia, Maryland
National Alopecia Areata Foundation
65 Mitchell Boulevard, Suite 200B
San Rafael, CA 94903
Phone: 415-472-3780
Fax: 415-472-5343
Email: [email protected]
Website: www.naaf.org
NAAF is a private, tax-exempt, nonprofit organization
pursuant to Section 501(c)(3) of the Internal Revenue Code,
and all gifts and donations to NAAF are tax deductible.
Tax ID number is 94-2780249.
Printed on recycled paper
© 2014 National Alopecia Areata Foundation
Dory Kranz
Chief Program Officer
Jeanné Rappoport
Chief Administrative Officer
Laura Ralph
Support & Education Director
Mary Cosgrove
Publications & Technology Director
Gary Sherwood
Communications Director
Marc Glashofer, MD
Island Dermatology
Long Beach, New York
Gary Gordon, MD, PhD
NAAF Board of Directors
Chicago, Illinois
Lloyd E. King, MD, PhD
Vanderbilt University
Nashville, Tennessee
Julian Mackay-Wiggan, MD, MS
Columbia University
New York, New York
Amy McMichael, MD
Wake Forest University
Winston-Salem, North Carolina
Gary Gordon, MD, PhD
Pharmaceutical Research
Highland Park, Illinois
Abby Ellison
Executive Assistant
Alan Moshell, MD
George Washington University
Washington DC
Donna Hakim
Marketing Consultant
Wall, New Jersey
National Alopecia Areata Foundation
2013 Scientific Advisory Council
Sigfrid A. Muller, MD
Las Vegas Skin and Cancer Clinic
Las Vegas, Nevada
Ann S. Hedges
Artist
San Francisco, California
Maria Hordinsky, MD, Chair
University of Minnesota
Minneapolis, Minnesota
Elise A. Olsen, MD
Duke University Medical Center
Durham, North Carolina
Debora Pellicano
Brand Finance Manager
Drug Development Company
Wilmington, Delaware
David Norris, MD, Past Chair
University of Colorado Health Sciences Center
Denver, Colorado
Anthony Oro, MD
Stanford University Medical Center
Palo Alto, California
Jerry Shapiro, MD, FRCP, Vice Chair
University of British Columbia
Vancouver, BC, Canada
Len Sperling, MD
Uniformed Services University
Bethesda, Maryland
Vicki Kalabokes, Executive Secretary
President and Chief Executive Officer, NAAF
Richard Strick, MD
UCLA School of Medicine
Los Angeles, California
Brian Ter Haar
Business Owner
Baton Rouge, Louisiana
Allison Waggoner
ShopNBC TV Host
Eden Prairie, Minnesota
Founding Chair
Vera H. Price, MD
Hair Research Center
University of California, San Francisco
San Francisco, California
Wilma Bergfeld, MD, FAAD
Cleveland Clinic
Cleveland, Ohio
Angela Christiano, PhD
Columbia University
New York, New York
Madeleine Duvic, MD
MD Anderson Cancer Center
Houston, Texas
John Sundberg, DVM, PhD
The Jackson Laboratory
Bar Harbor, Maine
David A. Whiting, MD
Baylor Hair Research & Treatment Center
University of Texas Southwestern Medical Center
Dallas, Texas