2009 - National Alopecia Areata Foundation
Transcription
2009 - National Alopecia Areata Foundation
Fast Track to Action in Research, Awareness and Support Annual Report for the Fiscal Year Ending December 31, 2009 / The National Alopecia Areata Foundation 2009 Annual Report Dear Friends: We want to share with you our very exciting news regarding recent developments and future plans for NAAF. To build on the success of our general Alopecia Areata Research Summit in 2008, we held a more focused international Research Summit on the Immunology of Alopecia Areata in 2009. At this summit world-renowned immunologists met directly with leading alopecia areata researchers for the very first time. This led to intense communication on a level not previously experienced and generated excitement and enthusiasm among the participants. We take great pride in the alopecia areata research that we have inspired and funded in the past, especially our genetic research. What we have learned not only advances our genetic knowledge of alopecia areata but frames and focuses our current immunology research. Most importantly, the information and data we have gained enables us to fast track our efforts to find a functional treatment or cure that will grow hair back. We can now move forward quickly and comprehensively, investigating all possible immunological avenues and drugs. With this approach, we know that some things will work and some will not—but we can learn from both success and failure! We are confident that the focused efforts of this past year have the potential to bring great rewards. Moreover, we remain committed in our fight to obtain insurance coverage for alopecia areata and federal funding for research. We are also unwavering in our determination to create public awareness of this disease. We are pleased to note our efforts have resulted in a #1 ranking on Google—without a penny spent on advertising. Through our many support programs we continue to provide day-to-day help to the people who need us most—individuals and families struggling with alopecia areata. And we are moved by the outpouring of letters, e-mails, and calls expressing gratitude. Won’t you join us and become part of this exciting time? Please review our accomplishments and help us do more. Regards, 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 few nonprofits out of the almost 1.5 million nonprofits in the United States that meets these strict standards. In addition NAAF meets all 44 of the standards required for membership in the National Health Council. Harris Barer Vicki Kalabokes Chair, NAAF Board of Directors NAAF President and CEO The National Alopecia Areata Foundation 2009 Annual Report / The National Alopecia Areata Foundation Fast Track to Action in SUPPORT FAST TRACKING EDUCATION AND COMMUNICATION efforts, empowering those af- a NAAF bibliography of books for kids with alopecia • We launched NAAF’s new website in 2009 to serve you fected by alopecia areata who areata; children’s supports groups; our Children’s better. It is more informative, more interactive, and in turn raise awareness in their Conference Camp; our PenPal/CyberPals program; more timely—and we are now able to conduct instant own communities. secure and private message boards for children and surveys to gather your input on everything we are • doing. We continue to improve and update • • • teens; a special KidNet section of the NAAF Newslet- were awarded to people in need, ter; and brochures for parents and kids. the information, support and re- enabling them to attend the confer- search pages to help you or ence. A total of 1,035 scholarships have been awarded alopecia areata access hard-to-find and much-needed your family members cope since the inception of our conference scholarship pro- products to ease their daily life. It now features 50 dif- with alopecia areata. gram. ferent merchants. The variety and quality of the prod- We launched our NAAF We- • The Alopecia Areata Marketplace helps people with ucts are exceptional. • Our Children’s Conference Camp, which has been held binar series with a webinar to in tandem with the patient conference since 1988, educate everyone on NAAF’s latest drew almost 200 children and teens. volunteers in 102 cities worldwide, organizing local research. Webinars have topics that have • 82 Conference Scholarships • Our International Support Network includes 117 loyal The Ascot Fund provided financial support groups and providing telephone support. been requested by you. grants to 78 men, women, and NAAF has started highlighting its support volunteers in We increased our NAAF Electronic News (Beneath the children so they could pur- each quarterly newsletter. Surface) communications with you. Now important chase hair prostheses. These information can be conveyed to everyone instantly. grants truly make a difference NAAF launched its Facebook and Twitter pages to in the lives of people. A total encourage even more interaction among our alopecia of 350 people have been aided by phone calls, and fax requests for areata family. grants from this fund since it was established in 2004. information. NAAF held its 24th International Patient Conference in • • Alopecia areata kids have many NAAF resources to • Our PenPal/CyberPal program now has over 1500 participants, including adults as well as children. • • NAAF responds to thousands of emails, NAAF is able to help more people Houston, Texas, in the summer of 2009, drawing 625 help them! We offer a nine-minute DVD/video that because of the help we receive participants from 38 states and 6 foreign countries. kids can share with family, friends, and schoolmates; from thousands of volunteers na- The conference is the key to all of NAAF’s support a school pack for use by parents and teachers; tionwide and internationally. / The National Alopecia Areata Foundation 2009 Annual Report The National Alopecia Areata Foundation Fast Track to Action in AWARENESS FAST TRACKING PUBLIC UNDERSTANDING to fight at the state level for insurance coverage for Whatever the motivation, we are thrilled that Charlie AND PUBLIC POLICY alopecia areata. continues to be a part of our organization; Charlie does NAAF, with the Coalition of Skin Diseases, produced a change lives, one game at a time. • NAAF has organized and supported efforts to set federal precedents for insurance coverage of • four-color poster which prominently featured alopecia health care costs related to alopecia areata, areata. This poster was mailed to 4,000 US dermatolo- including the purchase of a hair prosthe- gists for display on their examining room walls. sis. People call the NAAF office on a daily basis to tell us their insurance has denied such and this denial is • NBA player Charlie Villanueva, a NAAF • The first piece of federal legislation seeking insurance coverage for alopecia areata, the Alopecia Areata Medicaid Improvement and Parity Act, was introduced in the House of Representatives as HR 1142 for the 2009–2010 Congressional session. If enacted, this bill would require Medicaid to provide coverage for the cost of hair prostheses when prescribed sion, and web media publications during 2009. • Greet” and inspire children, parents Astros baseball game to raise and adults affected awareness of alopecia areata, by alopecia Our own Rebecca Hibbs sang the areata, but Char- national anthem before a crowd of over 40,000 people. How exciting to see her on the lie says the reverse Jumbotron! is true; he says these Meet & Greets really inspire him: • Gold Triangle Award to NAAF for furthering the under- alopecia areata kids every couple of standing of skin diseases among the general public. games. From the outside it looks like I’m doing this for We won the award for a Sports Illustrated article on them, but the truth is, I also do it for myself!” our spokesperson, Charlie Villanueva, highlighting the 2009 CHARLIE’S ANGELS MEET & GREETS first year of this congressio- Phoenix, AZ Chicago, IL Houston, TX Toronto, BC Washington, DC New York, NY strong display of support. • Volunteers like Heidi Bratt in Massachusetts continue The American Academy of Dermatology presented a “I get a lot out of meeting with diagnoses. By the end of the tives had co-sponsored this bill—a Over 500 NAAF Conference participants attended a Houston due to an alopecia areata nal session, twenty Representa- NAAF publicity efforts generated over 60 print, televi- Spokesperson, continues to “Meet & based on the standards set by current Medicare and Medicaid coverage. • Indianapolis, IN Milwaukee, WI Oakland, CA Atlanta, GA Boston, MA Detroit, MI Cleveland, OH Philadelphia, PA Charlotte, NC Minneapolis, MN difference he makes working with NAAF to “Meet & Greet” children with alopecia areata. • The Tortoise & Hair™ run/walk is growing into NAAF’s premier nationwide awareness and fundraising event; the run/walk held during our annual patient conference in Houston drew over 750 runners and raised over $30,000. The National Alopecia Areata Foundation 2009 Annual Report / • NAAF volunteers hosted fundraising and awareness events around the world, generating almost $142,000 for NAAF. All of these events are listed by state (or province) in this annual report. We offer our thanks to all the individuals and families who hosted—or • California Maine Ohio Friends of Kyle Beckman Alana Dube Family & Friends Paige Collins Family & Friends Vikram Bhatt Family & Friends Maryland Pennsylvania Bob Klepp Family & Friends Kyle Clowney Family & Friends Sandy Knepp Family & Friends Maria Eisenhardt Family & Friends Massachusetts Diane Gormley Family & Friends Heather Bronston Family & Friends events! Matt Kelley Family & Friends NAAF representatives and other members of the Coali- met with nearly over 100 members of Congress and their staffs to ask for increased funding for medical research. NAAF takes a very active role in educating medical professionals about alopecia areata, hosting informational exhibits at key medical and scientific confer- Makena Okamoto Family & Friends San Diego Support Group San Francisco Support Group Michigan Colorado Mallory Crowner Friends & Family Marilyn McNeil Friends & Family Andrew Erker Family & Friends Connecticut Connecticut Support Group Holly McDonald Family & Friends Florida Angela Hegge Family & Friends Carli Woods Family & Friends Academy of Dermatology, the Illinois Dermatology Nurses’ Associa- Ken & Jennifer Anderson Family & Friends Dermatology, and the American Friends of Westminster Elementary School Florita Sheldon Family & Friends ences, including the American tion, the Society for Investigative • Total Raised: $142,000! Janis Chapman Family & Friends matology, and the Society for Investigative Dermatology • NAAF gratefully acknowledges all of the AWESOME individuals and families that raised money and spread awareness on our behalf during 2009. participated in—these fantastic tion of Skin Diseases, the American Academy of Der- • FUNDRAISERS Karen & Michael Beckman Family & Friends Mississippi Natascha Donald Family & Friends Missouri Rebecca Hibbs Family & Friends Friends of the Sewickley Academy, Sewickley Tennessee Susan Hart Thompson Family & Friends Texas Midori Barry Family & Friends Friends of Bradley Middle School Jose Charqueno Family & Friends Adriana Beale Family & Friends Hope Dyre Friends & Family Megan O’Shaughnessy Family & Friends Alan Fonteneaux Family & Friends New Hampshire Elizabeth Magee Family & Friends New Hampshire Support Group New Jersey Liliana Hakim Family & Friends Beiana Maierle Family & Friends Friends of The Purnell School, Potterstown Jonathan Tucker Family & Friends Kristen Wegener Family & Friends Kaitlyn White Family & Friends Utah Glenda Stroh Family & Friends Virginia Academy of Pediatrics. Friends of Warren Township High School Our quarterly NAAF Newsletter continues to be recog- Indiana nized as a model for patient newsletters. Christian Dudley Friends & Family Our NAAF brochures continue to help those with Samantha Solomon Friends & Family New York Alexander Whitley Friends & Family Harrison Goldberg Family & Friends Kentucky Jack & Henry Keogh Family & Friends Emilee Lockwood Family & Friends Philip Maniscalco Family & Friends Washington DC Brittany Taurisano Family & Friends Natalie Mamerow Family & Friends Madison Urarro Family & Friends Wisconsin alopecia areata and educate the public. Louisiana New Mexico Kika Serna Family & Friends Blake Manola Family & Friends North Carolina Abby Ter Haar Family & Friends Samuel Lanning Family & Friends Friends of Girl Scout Troop 622, Glen Allen Washington Michael Lotto Family & Friends Tessa Romack Family & Friends Kaycee & Kiah Lang Family & Friends Max Trinko Family & Friends / The National Alopecia Areata Foundation 2009 Annual Report The National Alopecia Areata Foundation Fast Track to Action in FAST TRACKING TO A PRACTICAL CURE • • The NAAF Research Summit on the Immunology of Alopecia Areata set priorities to advance alopecia areata research in the area where we feel we have the best chance of rapid success. NAAF conducted this high-powered, fast-paced, collaborative, and interactive summit, which took place in Denver, Colorado in August, to accelerate a knowledge of alopecia areata and a search for therapies among leading immunologists around the globe. The immunologists in attendance felt that alopecia areata research could greatly benefit from approaches used for other autoimmune diseases, and they made the following recommendations: 1. Use autoantibody specificities to begin to identify autoimmunity specificity in alopecia areata. 2. Identify antibodies to infectious organisms as clues to infectious triggers of disease. 3. Develop better models to test T-cell specificities in alopecia areata as well as possible mechanisms of disease. 4. Develop new leads in pathogenesis arising from genetic studies, e.g. natural killer cell effects. 5. Develop an approach to screen new treatments that might be useful in alopecia areata, using drugs developed for other autoimmune diseases. RESEARCH NAAF is working to fast track data and material gath- By the end of 2009, over 8,000 people had completed ered by the National Alopecia Areata Registry, which the initial registration questionnaire. Over 2,700 of was established at NAAF’s urging and which has been these people had also completed the second phase of supported by NAAF since its inception in 2000. The registration, providing blood samples and undergoing scientific community unanimously agrees that this reg- a medical exam. The more people we have in the reg- istry has been one of our most important successes. istry, the more we learn about alopecia areata and the Alopecia areata tends to run in families, and this regis- more clues we gain to find a possible cure. try, which is currently funded by the National Institutes • NAAF was one of just four national patient organiza- of Health (NIH), is being used in part to determine tions selected to attend the American Academy of Im- which genes contribute to a susceptibility to alopecia munologists 2009 Research Advocacy Program. The areata. Identification of these genes will provide a meetings explored the most effective ways to advocate starting point for further investigation and perhaps new for immunology research. therapies. The National Alopecia Areata Foundation 2009 Annual Report / Research Grant Recipients GENETICS Angela Christiano, PhD Columbia University New York, New York Genome-Wide Search for Alopecia Areata Susceptibility Genes (NAAF is providing extra funding for Christiano’s work with the National Alopecia Areata Registry.) Dr. Christiano has used samples from the National Alopecia Areata Registry to study the genetics of alopecia areata. both gene expression and the effect of altering vitamin A in both the collapse and restoration of immune privilege. This the diets of affected mice. The results showed changes in pilot study showed hope in this area but more studies are the cytokine and chemokine levels in the dorsal skin. Follow needed. up studies might offer an obvious target for therapy. CLINICAL TRIALS IMMUNOLOGY Maria Hordinsky, MD Ralf Paus, PhD University of Minnesota University of Luebeck Minneapolis, Minnesota Luebeck, Germany Adrenal Function and Use of Exploration of Clinically Relevant Intralesional Triamcinolone Acetonide in Strategies for the Restoration of Patients with Alopecia Areata Human Hair Follicle Immune Privilege This study used a well-established therapy for alopecia Paus studied the immune system as it relates to hair areata, but focused on aspects that may indicate its short- follicles. Normal hair follicles do not express certain and long-term safety. Since most patients with severe proteins that are required for an attack by white blood alopecia areata are subjected to intralesional triamcinolone Bit by bit, Dr. Christiano is narrowing the list of possible genes cells. Therefore, normal hair follicles seem to be relatively acetonide, which is a corticosteroid, at some point, the that may be associated with alopecia areata. It takes both time safe from attack by white blood cells. But we know that results will be of practical importance. Patient recruitment and money to sort through the “genetic haystack” in search in alopecia areata the hair follicle is indeed attacked. Paus was difficult but the results of this study will be available of the “alopecia areata needle,” but once we have found that sought to determine why normal hair follicles are protected soon. needle—or needles (there are probably multiple genes involved from immune attack, while alopecia areata follicles are not. The technology for doing this is complex, since investigators NATIONAL ALOPECIA AREATA REGISTRY in alopecia areata)—we will understand more about what causes this disease and also have better targets for therapy. The cannot experiment on live patients! This area of study is still results of the studies funded by this grant have been published and show commonalities in gene expression with several other autoimmune diseases. MOUSE MODELS OF DISEASE Helen B. Everts, PhD, RD Ohio State University Columbus, Ohio Role of Dietary Vitamin A in Alopecia Areata Disease Progression in the C3H/HeJ Mouse Model Studies of gene expression have shown that certain genes involved in vitamin A metabolism are altered during the hair cycle. Since alopecia areata is a hair cycle disorder, the investigators decided to evaluate the affect of vitamin A on the current alopecia areata mouse model. Everts looked at in its infancy, but information is slowly emerging. With more follow-up studies over the course of the next few years we hope find some good targets for therapy in alopecia areata. Michael Philpott, BSci, DPH Barts and the London Queen Mary’s School of Medicine London, United Kingdom Development of Co-Culture Models to Investigate Hair Follicle Lymphocyte Madeleine Duvic, MD MD Anderson Cancer Center Houston, Texas Support Grant for the National Alopecia Areata Registry This registry, which is currently supported in large part with a grant from the NIH, is not only gathering actual patient descriptions of their disease, but also samples of their blood, which can be used for various genetic studies. This registry is one of the most important projects supported by NAAF because it provides valuable material to many different Philpott’s team of researchers have grown human hair investigators who are studying various aspects of alopecia follicles isolated from redundant human skin and have areata. modeled both the collapse of immune privilege and its restoration. They have also investigated how the cells of the immune system respond to cultured hair follicles following / The National Alopecia Areata Foundation 2009 Annual Report STATEMENT OF ACTIVITIES FOR THE YEAR ENDED DECEMBER 31, 2009 STATEMENT OF FINANCIAL POSITIONDecember 31, 2009 ASSETS Unrestricted Temporarily 2009 Restricted Total REVENUES: Donations—general $425,213 $ - $425,213 Donations—stock and major donors 434,997 - 434,997 Restricted grants and donations - 31,142 31,142 Conference 170,226 9,230 179,456 Special events—Links for Locks and Tortoise & Hair 48,283 48,283 Prior year grant reimbursements - Awareness campaign 77,137 3,600 80,737 Newsletter income 22,018 16,050 38,068 Alopecia Areata Marketplace 5,008 - 5,008 Brochures and videos 364 - 364 Interest and dividend income 15,266 - 15,266 Net realized and unrealized gains (losses) on marketable securities 50,174 - 50,174 Net assets released from restrictions 143,329 (143,329) Total revenues 1,392,015 (83,307) 1,308,708 Unrestricted Temporarily Restricted EXPENSES: Program services: Research 114,172 - Education and support 797,193 - Support services: Fundraising 158,438 - Management and general 80,456 - SPENDING 79% PROGRAM Support, Research, and Awareness 2009 PERCENTAGE Current assets: Cash and cash equivalents $ 605,265 Marketable securities 366,108 Accounts receivable 5,871 Prepaid expenses and other current assets 102,367 Total current assets 1,079,611 Fixed assets, net of accumulated depreciation 12,665 Total assets $1,092,276 LIABILITIES AND NET ASSETS Current liabilities: Accounts payable Accrued vacation payable Total current liabilities Net assets: Unrestricted Temporarily restricted Total net assets Total liabilities and net assets 2009 $ 12% FUNDRAISING 46,644 14,872 61,516 9% MANAGEMENT 986,879 43,881 1,030,760 The Statement of Financial Position of the National Alopecia Areata Foundation as of December 31, 2009, was audited by R. J. Ricciardi Certified Public Accountant. A copy of the complete audit report, including notes, is available for public review upon request from NAAF, 14 Mitchell Blvd., San Rafael, CA 94903. $1,092,276 2009 Total INCOME FOR 1,550,000 114,172 797,193 1,500,000 FISCAL YEARS 1,450,000 1,400,000 1981-2009 1,350,000 1,300,000 158,438 80,456 1,250,000 1,200,000 1,150,000 1,100,000 Total expenses 1,150,259 Change in net assets Net assets, beginning of period 241,756 745,123 - 1,150,259 1,050,000 1,000,000 950,000 (83,307) 127,188 158,449 872,311 900,000 850,000 800,000 750,000 700,000 650,000 600,000 550,000 500,000 450,000 400,000 350,000 300,000 250,000 200,000 150,000 100,000 2009 2008 2007 2005 2006 2003 2004 2001 2002 1999 2000 1998 1997 1995 1996 1993 1994 1991 1992 1989 1990 1988 1987 1985 1986 1983 50,000 1984 $43,881 $1,030,760 1981 $986,879 1982 Net assets, end of period The National Alopecia Areata Foundation 2009 Annual Report / NAAF DONORS from January 1, 2009 – December 31, 2009 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 · Individuals Anonymous · Harris & Helen Barer · Jeffrey & Ginny Kelter · Wendy & Brian Ter Haar Foundations and Organizations Estate of Robert D Desmond · Sunshine Charitable Foundation, Lake Forest, IL GOLD BENEFACTORS $25,000 TO $49,999 Individuals Jay & Peggy Bokulic · Dr. Gary Gordon & Marilyn Hirsch · Donna & Matt Hakim · Family & Friends of Lilliana Hakim · Ann S Hedges · Maureen McGettigan · Family & Friends of Abby Ter Haar · Family & Friends of Elizabeth Magee & Jonathon Tucker Foundations and Organizations Heckscher Foundation for Children, New York, NY SILVER BENEFACTORS $10,000 TO $24,999 Individuals Anonymous · Caroline & David Brown · Margery & Rob Goldberg · Diane & Charles Gormley · Bill & Stacy Owen · Monik Graunke-Sadowski · Vicki Kalabokes · Alan & Kathy Pallie · Lawrence & Sandra Small · Drs. Carol & Gary Ter Haar Businesses Murray Hill Chiropractic, New York, NY · Rumel, Purcellville, VA Foundations and Organizations Laffey-McHugh Foundation, Wilmington, DE GRAND BENEFACTORS $5,000 TO $9,999 Individuals Kathleen Bocchinfusco Family & Friends · Warren & Jinhong Deitch · Judith Glick · Marcia Grimm · Philip & Peggy Holland · Sybil Ralston · Sidney & Susan Rubenstein · Ray & Susan Simmons · Maxine & Jack Zarrow · Scott & Hilary Zarrow Businesses E & J Gallo Winery, Modesto, CA · Johnson & Johnson, Morris Plains, NJ Foundations and Organizations California Community Foundation, Los Angeles, CA · Evergreen Foundation, Atlanta, GA · Richard & Rhoda Goldman Fund, San Francisco, CA · Maxine & Jack Zarrow Family Foundation, Tulsa, OK MAJOR BENEFACTORS $2,500 TO $4,999 Individuals Nancy Polley Aibel · Cynthia & Woody Andrews · Midori, Kat & Marc Barry Family & Friends · Claire Chandler · Family & Friends of Paige Collins · Allison Dunlop · Hope & Theresa Dyre Family & Friends · Hilda Forman · Bruce Fiscus · Thomas Gervasi · David & Ami Handler · Rebecca Hibbs Family & Friends · Matt Kelley · Tom & Sharon Kelley · Sara Kluener Family & Friends · Noel Kratzmann · Eugene & Shirley Levitt · Nancy & Philip Maniscalco Family & Friends · Robert & Maureen McDonald · Mindy Myers · Mr. & Mrs. Theodore Nevins Jr. · Rita & Robert O’Connor · Kate Paley · Debora & Luis Pellicano · Marcia Rimai & Daryl Diesing · Lisa, Daniel & Brittany Taurisano Family & Friends · Jay Tendler · Friends & Family of Katie Thompson · Ed & Mary Wojtowicz Businesses Harley Davidson of Baton Rouge, Baton Rouge, LA · Taglich Brothers, Huntington, NY Foundations and Organizations Trust Under Will of John G Areson, Montclair, NJ BENEFACTORS $1,000 TO $2,499 Individuals Herbert & Annabel Abrams · Dr. Rex & Johnnie Amonette · Ken & Jennifer Anderson Family & Friends · Karen Annis & Mike Dazy · Krista Bailey · John Barton · Baumgart/Beckman Family & Friends · Michael & Karen Beckmann · Andrea & Robert Belford · Laura Bivins · Nancy & Vernon Black · Judy & Gary Bloom · Linda & Paul Brady · Susan & Steven Burlingame · Janet Burkett & Wayne Meyer · Stephen Chaletzky · Mike & Janis Chapman · Carl & Suzanne Chiappa · Robert & Barbara Cohen · Joseph & Patricia Combs · Jim & Marilyn Cook · Mallory & Michael Crowner · Patricia Davidson · David & Lynn Dickens · Family & Friends of Natascha Donald · Dr. Richard Dosek · Laura & Stan Drahos · Frances & Mark Eisenhardt · Deloris Erickson · Craig & Brook Erker · Shaila & Karl Fernandes · Jim & Carla Flug · Sandy & Carlos Frum · Dr. Marc Glashofer · Jeffrey Goins · Darlene & James Graham · Andrew & Eleanor Grant · Lisa & Julian Grant · Dr. Julius & Dorothy Grieco · Nora & Madison Grose · Joseph & Jean Hamilton · Earl & Kay Harbaugh · Debbie & Rich Harris · Joyce Hawkins · Kandace Hawkinson · Mary D & Jeremiah Hegarty · Benjamin Henry · Virginia & David Hilyard · Bruce & Rebecca Hollinger · Paul & Patti Jablonski · Stephanie & Stephan Keefe · Despina & Brian Keegan · Peter & Karen Kensicki · Dr. Lloyd E King Jr. · Virginia & Robert Kirkwood · Jason Kist · Friends & Family of Sandy Knepp · Sue & Gary Kostecki · Jeremy Kramer & Becca Davies · Robert & Judy Krischker · Joe & Barb Lamoureux · Hoy & Gwen Lanning Jr. · Winnie Leung · Fred Levin & Leslie Dumont · Irving & Lenore Levine · Susan MacMillan · Peter & Debby Magowan · Stewart & Barbara Mandell · Marie & Thomas Mason · Nancy Matthews · Jamie & Tadd May · Family & Friends of Ruthie Mayfield · Marie McElheny · Becky & Brendan Molloy · Dr. John & Carolyn Ann Moody · T J Morris · Michael & Christine Moscato · Rose & Henry Moskowitz · Dorothy Oberto · Robert & Frances Oshiro · Hays Owen · Kathy Pauli & John Eldred · Karen Peterik · Chris Pitsaroff · Dr. Vera H Price · Jane & Paul Rittmaster · Phyllis & Sidney Rodbell · Tessa Romack Family & Friends · Tom & Terri Rossi · Dr. Joseph & Patricia Russ · David Saltzberg · Ken & Mary Sanchez · Brian & Lynn Schaezler · Collins & Gail Seitz · Florita Sheldon Family & Friends · Thais Smart · James & Jackie Snook · Jerry & Janet Solomon · Sandra & Bruce Swanson · Robert, Holly & Nicole Tassin · Josh Tenuta · Ranjit Thaker · K V Valluzzo · Charles & Robert Villanueva · Bryant & Sharron Watts · Thomas & Carolyn Werner · Family & Friends of Melissa & Katie Williams · Vicki & Jason Zagrodzky Businesses Astellas Pharma US, Deerfield, IL · C & K Healing Touch, New York, NY · China Acupuncture Services, Mt. Kisco, NY · Di Fazio Electric, Deer Park, NY · Eagle Snacks, Chicago, IL · City of Houston, Houston, TX · IBM, Endicott, NY · Infinity Investments, Houston, TX · JDC/Firethorne, Katy, TX · Lori’s Wigsite, Coconut Creek, FL · Mc 2 Enterprises, Baton Rouge, LA · P&G, Cincinnati, OH · Verizon, Long Beach, CA Foundations and Organizations Arkay Foundation, Pacific Grove, CA · Connecticut Support Group · The Drescher Foundation, Bethesda, MD · Girl Scout Troop #622, Glen Allen, VA · Granite Falls School District 332, Granite Falls, WA · Kirkland & Ellis Foundation, Chicago, IL · The Krischker Family Foundation, Phoenixville, PA · Northwestern Mutual Foundation, Milwaukee, WI SPONSORS $500 TO $999 Individuals Dr. Harry Agress Jr. · Lindsay Allen · Barbara Amspoker · Lauren Arnold · Lindy Barrow · Gordon Belshaw · Friends & Family of Vikram Bhatt · Lisa Bingenheimer · Lindsay Boles · Ray & Betsy Braun · Chris & Diane Brody · Dennis & Catherine Bye · Marie Caldaro · John Caldwell · Stephen & Christine Campbell · Helen & Victor Castillo · Lance & Valerie Castle · Donald & Patricia Chambers · Michael Chetock · Dr. Willis Cottel · John Creedon · Celeste & Antimina Croce · Andrew & Ellen Dannenberg · Leonard Dariano · Donovan & Patricia Davis · Robin DeArmond · Nick & Mary Demos · Karen & Michael Dermo · David & Barbara Dobrinen · Dr. Michael Domboski · Michelle Dupuy · Dr. Madeleine Duvic · Kathleen & Ed Edwards · Kerri Elpers · Friends & Family of Andrew Erker · Delores Evoe · Jennifer & John Fahey · Barry & Odile Fidelman · Andrew & Debra Filla · Lorraine Fowler · Deborah Fusco · Bobbie & James Gates · Lindsay Geyer & Jon Inge · Barbara & James Gilligan · Gary & Doreen Gittings · Thomas Godfrey · Diane & Bob Goon · Ann Green · Daniel & Kathleen Groszkiewicz · Ernest & Ellen Guenzburger · Margaret Haddix · Patty & Wayne Hall · Sally & Stephen Harr · Carol & Timothy Hart · Friends & Family of Angela Hegge · Sylvia Heisman · Jack & Faye Herick · Michael & Theresa Hibbs · Dr. Steven & Mary Hieronymus · Carla & John Hodulik · Dr. Jean Holland · David & Stephanie Honeycutt · Lee Hood & Peter Elkins · Jane Hosp · Wayne & Cherie Hubbell · Doris Johnson · Elizabeth Kaner · Allie Kanter · Bruce Kelleher · Catherine Kelly · Friends & Family of Jack Keogh · Brian & Cindy Killough · Robert & Emily King · Robert & Patricia Klepp Family & Friends · Linda & David Kolifrath · Lisa & Daniel Kopina · Dr. Gerald Krueger · Raymond Kwong · Samuel Lanning · Donna & Cliff Lazarus · Tracy Leopardi · James & Melanie Liu · Mary Longsine · Celeste Lutrario · Christine & Alfred Maierle Family & Friends · Jean, Mark & Natalie Mamerow · Cathy & Ross Manzo · Carol Mayer · Vanessa McCann · Chad & Sharon McGee · Leona McGettigan · Nancy & Tom McGrath · Elizabeth & Gordon McNabb · Edward, Ava & Jordan Mendelson · Richard & Cheryl Metrick · Stan Michael · Stephen & Marsha Mock · Mr. & Mrs. Steven Morley · Darcy & Stephen Morrissette · Peggy Napier · Bruce & Joan Nordstrom · Dan Odenheimer · Heidi Odmark · Dr. Elise Olsen · Dr. David Orentreich · Robert & Jean Paine · Christina Palendrano · Admiral Robert Papp · Steven Perricone · Thomas & Virginia Pollock · Kelly Pratt · Alice Price · David R Prugh · Phillip & Bonnie Rabideau · Allen & Sidney Rishe · Dr. Janet Roberts · Janis Roberts · Daniel & Lauren Rosa · Kenneth Satir · Martin Setler · Stephen & Jane Silk · Gordon & Julie Smith · Anita & Todd Solomon · Donald Sosnowitz · Nancy Stark & Stanley Iezman · Gail Swenson · Jacqueline & Julian Taub · Denise Thornton · Trish Tramaglini · Jennifer Trinko · Susan Turner · Madison Urraro Family & Friends · Mary & Joseph Urraro · Jeffrey & Jamie VanDeusen · Margaret Veldman · Eric & Lynsey Vinikoff Family & Friends · Amy & Peter Viteznik · Joan Walborn · Amy & Ira Waldman · Cecil Weintraub · Melanie & Mark Whitmore · Ellen & John Whittle · Edith & Kawin Wilairat · Darlene Wisecup · Jan Wolf · Vincent Wong · Patti Wood · Ruth Ann Wood · Martha Worthy · Michael Zuravel DeNunzio · Thomas & Betsy Dell’Isola · Tony Dermo · Celeste Descoteaux · Guerino & Julie Desimone · Norman Deumite · Susan & Patrick Devane · Michael & Jacqueline Dewey · Mark Dobbins · Andrea, Randy, & Alana Dube · Alston & Michele Dunbar · Kristine Eule · Richard Ferguson · Stephen & Jean Fey · Danielle & Allon Fish · F Emmett Fitzpatrick III · Bernardo Fleischer · Jerry & Janice Ford · Thomas Fowler · Bill & Rosanne Frickenstein · Debbi Fuller · Kelly Gallagher · Jules & Karen Gardner · Brenden & Jennifer Garvey · Kathy & Lee Gause · Diana & David Gerland · Stephen Gervasi · Linda & Leo Gordon · Margaret Graham · Mary Jo & Thomas Gubricky · Edward & Patricia Hakim · Mark Hakim · Gary & Linda Hammell · Harold Harms Jr. · Drs. 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& Fashions, Marietta, GA · Anokhi USA, Newport, NH · Apple Harvest Giving Circle, Baltimore, MD · Aquarius Restaurant, Media, PA · Arizona Wig Company, Scottsdale, AZ · Baja Fresh Mexican Grill, Capistrano Beach, CA · Bernie’s Party Shoppe & Drive Thru, Alliance, OH · Bidwell Consulting Services, Chico, CA · Business & Industry Communication Alliance, Baton Rouge, LA · Cache’Store #73, Edison, NJ · Carolina Coastal Cutters, Wilmington, NC · Continental Hair Restoration, Bayonne, NJ · Cosmetic Imaging Center, San Francisco, CA · Cross Jewelers, Portland, ME · Dave’s Auto Service, Haubstadt, IN · David’s Poultry, Endenheim, PA · Dubose Entertainment, Cary, NC · Fabio Perini, North America, Green Bay, WI · Glenco, Middlesburg, PA · GoodSearch, Los Angeles, CA · Grand Vision, Katy, TX · I Catchers Hair Studio, Baton Rouge, LA · JPC Holding, Spring Lake, NJ · Jo Jo Concepts International, Wantagh, NY · Just Imagine It, Oregon City, Oregon · Kenobi Solutions, Freehold, NJ · May Roofing & Siding, Salem, WI · NBA Credit Union, Bristol PA · Oliver’s Hair Replacements, Dallas, TX · Pacific AG Commodities, Sacramento, CA · Pennfleet Corporation, Conshohocken, PA · Premier Funding Network, Yorba Linda, CA · Projetech, Cincinnati, OH · RJK Associates, Cincinnati, OH · Relay Express, Fairfield, OH · Rene of Paris, Van Nuys, CA · Riva Productions Downstage, Morrisville, PA · Robert McIntyre Insurance, St. Davids, PA · Roshto Electric Company, Baker, LA · Schock’s Automotive, Philadelphia, PA · Shamrock Plumbing & Heating, Marlboro, NJ · Slumbercap, San Diego, CA · St. John Valley Pharmacy, Fort Kent, ME · Stamp Me Fabulous, Rancho Palos Verde, CA · Tabiatha Harrier Concierge, Flourtown, PA · This Little Gallery, Jenkintown, PA · Vogue Wigs, Santa Ana, CA · Wal-Mart, Canton, TX · Weintraub Genshiea Chediak, Sacramento, CA Foundations and Organizations Brusly Lions Club, Brusly, LA · Caberry United Methodist Women, Cabery, IL · Delta Sigma Theta, University, MS · Disciple Group, Seaford, DE · I Do Foundation, Washington, DC · Knights of Columbus, Eatontown, NJ · Knights of Columbus, Fair Haven, NJ · Knights of Columbus, Hazlet, NJ · Maryland Charity Campaign, Baltimore, MD · Mohawk Avenue School, Sparta, NJ · Nova Scotia Support Group, Sydney, Canada · Parkway School District, Ballwin, MO · Rogers Elementary School, Waterloo, IL · St. Charles Borromeo School, Milwaukee, WI · San Francisco Support Group, San Francisco, CA · The Ensign-Bickford Foundation, Simsbury, CT · The Morris I Witlow Memorial Fund, Jenkintown, PA · Wachovia Foundation, Princeton, NJ NATIONAL ALOPECIA AREATA FOUNDING CHAIR FOUNDATION Vera H. Price, MD Hair Research Center University of California, San Francisco San Francisco, California 2009 BOARD OF DIRECTORS Harris Barer, Chair Partner, Law Firm New York, New York Brian Ter Haar, Chief Financial Officer Business Owner Baton Rouge, Louisiana NATIONAL ALOPECIA AREATA FOUNDATION 2009 CORPORATE STAFF Angela Christiano, PhD Columbia University New York, New York Ralf Paus, MD University of Hamburg Hamburg, Germany Madeleine Duvic, MD MD Anderson Cancer Center Houston, Texas Len Sperling, MD Uniformed Services University Bethesda, Maryland Marc Glashofer, MD Island Dermatology Long Beach, New York Richard Strick, MD UCLA School of Medicine Los Angeles, California Gary Gordon, MD, PhD NAAF Board of Directors Chicago, Illinois John Sundberg, DVM, PhD The Jackson Laboratory Bar Harbor, Maine Lloyd E. King, MD, PhD Vanderbilt University Nashville, Tennessee David A. Whiting, MD Baylor Hair Research & Treatment Center University of Texas Southwestern Medical Center Dallas, Texas Jay Bokulic, Secretary Program Manager Ashburn, Virginia Vicki Kalabokes President and Chief Executive Officer Nancy Polley Aibel Travel Consultant New York, New York Jeanné Rappoport Vice President Administration and Meetings Bernard Fineman Business Owner Louisville, Kentucky Lisa Butler Vice President Communications Amy McMichael, MD Wake Forest University Winston-Salem, North Carolina Laura Ralph Resource and Information Specialist Sigfrid A. Muller, MD Las Vegas Skin and Cancer Clinic Las Vegas, Nevada Mary Cosgrove Website and Database Specialist Elise A. Olsen, MD Duke University Medical Center Durham, North Carolina Bruce Fiscus Businessman San Francisco, California Gary Gordon, MD, PhD Pharmaceutical Research Highland Park, Illinois Donna Hakim Marketing Consultant New Jersey Ann S. Hedges Artist San Francisco, California Maureen McGettigan Senior Account Executive, Drug Development Company Flourtown, Pennsylvania Alan Pallie Business Owner San Rafael, California NATIONAL ALOPECIA AREATA FOUNDATION 2009 SCIENTIFIC ADVISORY COUNCIL David Norris, MD, Chair University of Colorado Health Sciences Center Denver, Colorado Jerry Shapiro, MD, FRCP, Vice-Chair University of British Columbia Vancouver, BC, Canada Vicki Kalabokes, Executive Secretary President and Chief Executive Officer, NAAF Anthony Oro, MD Stanford University Medical Center Palo Alto, California Members of the NAAF Volunteer Board of Directors top left to right: Jay Bokulic, Brian Ter Haar, Gary Gordon, Bernie Fineman, Harris Barer. Front, left to right: Maureen McGettigan, Alan Pallie, Nancy Polley Abel, and Ann S. Hedges. / The National Alopecia Areata Foundation 2009 Annual Report 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. 14 Mitchell Boulevard 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 using vegetable-based inks. © 2010 National Alopecia Areata Foundation
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