2011 1981 National Alopecia Areata Foundation 1985 Is Formed
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Annual Report for the Fiscal Year Ending December 31, 2011 1981 National Alopecia Areata Foundation 1985 is formed. First of 26 NAAF Conferences is held in Las Vegas. 1989 1991 NAAF awards a record $134,000 NAAF testifies before a Congressional for research. Subcommittee, the first of 10 oral testimonies. 1992 First of 1,218 NAAF Conference Scholarships is awarded. 1995 The 10th Annual Conference, the largest to date, welcomes over 700 attendees in Boston. 2007 NAAF leads 600 volunteers to advocate on Capitol Hill on behalf of alopecia areata research. 2008 First federal bill (HR5936) providing insurance coverage for alopecia areata patients is introduced. 2010 Newly initiated timeline for NAAF’s Treatment Development Program (TDP) accelerates our quest for a viable treatment. Milestones on a Three-Decade Journey Photo by Jay Roberts Photography Dear Friends, Take a trip back in time with us. The year is 1981. Ronald Reagan is sworn in as the nation’s 40th president. Indiana Jones first cracks his whip in Raiders of the Lost Ark. “Bette Davis Eyes” rules the airwaves, at least until the arrival that summer of a small cable channel called MTV. The Dodgers beat the Yankees in six games to clinch the World Series. And a rare autoimmune disease that has afflicted men and women, children and adults since the beginning of recorded time at last meets its equal in the founding of an organization called the National Alopecia Areata Foundation (NAAF). It may sound strange now but in 1981 we barely knew how to spell alopecia areata, let alone treat it. What we did know was that this was an unusually tenacious disease, and as such it would require an unusually tenacious organization, led and staffed by unusually tenacious people, to combat it. Researchers, board members, support counselors, staff— everyone affiliated with NAAF—would have to be uncommonly committed to supporting the people who suffer from alopecia areata, raising the awareness of their families and friends, and eradicating the disease itself. While alopecia areata has plagued sufferers for several millennia, in just the past three decades NAAF has made bold strides in genetic and dermatological research barely imaginable in 1981. And NAAF will continue to do so until the causes of this disease are discovered, the people who are susceptible are protected, and alopecia areata is finally defeated. In 2011, our Treatment Development Program scored an almost dizzying amount of accomplishments—such as funding an alopecia areata autoantibody study at the University of Colorado, leveraging resources for a new alopecia areata biomarker study at Columbia University, and officially contracting with MD Anderson Cancer Center in Houston, Texas, to take over the responsibility for funding the National Alopecia Areata Registry. Until alopecia areata is a thing of the past, our efforts remain unabated. Our peerless support network continues to make real differences in the lives of both individuals and their families. We are finding new ways to raise awareness, most recently through successful events with Major League Baseball teams. New media allows us to spread news, support, and hope through Facebook and Twitter in addition to more traditional venues like our website, informational materials, DVDs, electronic and print newsletters, the Ascot Fund and the Alopecia Areata Marketplace. In 2011, we saw the cumulative effect, the real progress, stemming from thirty years of persistent effort. Today NAAF renews its pledge to provide all of its energy, resources and guidance to our community; we hope you know we will always advocate, always research, always fight beside you and with you on behalf of people with alopecia areata. NAAF and its members stand more united than ever in a common purpose staked by three decades of research, support and awareness. One can only imagine what the future years will bring. Brian Ter Haar Vicki Kalabokes Chair, Board of Directors, 2012 President and Chief Executive Officer 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 44 of the standards required for membership in the National Health Council. 1 “Thank you for the opportunity to learn and be part of this year’s conference. It is a wonderful thing to have the scholarship fund. It made the conference happen for me! Thanks for all efforts.” • NAAF’s 26th Annual International Conference, held in Los Angeles, was a huge success thanks to a program full of new and fun events, a lineup of great guest speakers, a fantastic hotel, and the hard work of our incredibly devoted volunteers and staff. It was an unforgettable experience for all 832 attendees. “Thank you so very much for the scholarship you gave me to attend the LA Conference! It was great to see everyone again and make new friends. It was my first time to California and I loved it! I am considering becoming a Support Group Leader and at the conference I met a family from nearby that is in need of support. So that was a step toward success!” • 97 Conference Scholarships were awarded to people in need, enabling them to attend the conference. A total of 1,218 scholarships have been awarded since the inception of our conference scholarship program. • Conference attendees came not just from 37 states, but from Australia, Canada, Hong Kong, Japan, New Zealand, Panama and Sweden. “I’m writing to express my most sincere gratitude for making it possible for my daughter and I to stay at the conference hotel for this year’s NAAF conference. As a single mom, it’s been hard over the years to make out-of-town trips happen for us. This was by far the most awesome traveling experience we’ve had together. When my daughter was 7 she was diagnosed with alopecia areata. Until then I’d never even heard of it. The last 3 years have seemed to make me an expert on the subject, but no amount of research can prepare you for the feeling of comfort, community, joy, and acceptance that she and I both experienced over the conference weekend.” CONFERENCES • The NAAF website provided up-to-the-minute information on research, support and resources, programs and events, and much, much more. As of December 31, 2011, it had received over 13 million hits. Go to www.naaf.org to see for yourself! COMMUNICATION • The NAAF Facebook page and Twitter feed offered the latest news regarding the alopecia areata community and its doings. Best of all, you got to interact with us by sharing your comments and questions. We loved hearing from you! As of December 31, 2011, the NAAF Facebook page had over 400 fans and over 4,000 likes, and the NAAF Twitter feed had COMMUNITY over 800 followers. 1981 1987 1992 The National Alopecia Areata New executive director Vicki Kalabokes First of Foundation is formed. writes, “[NAAF] is ready to change from 1,218 NAAF infancy into early childhood. This is Conference both scary and exciting.” Scholarships is awarded. 1985 1988 First of 26 NAAF First Children’s Conferences is held Conference Camp in Las Vegas. is held. 2 SUPP • Our NAAF Electronic News, Beneath the Surface, continued to provide a quick-reading roundup of information important to some 15,000 readers in the alopecia areata community. • A total of 87 men, women and children received financial grants from the Ascot Fund in order to purchase hair prostheses. These grants make an incredible difference in the lives of those affected. Since this very special program was established in 2004, a total of 501 people have been helped. • Some 54 different merchants were accessible through the Alopecia Areata Marketplace, each providing hard-to-find and much-needed products to those with alopecia areata. The variety and quality of the products were exceptional. • NAAF had 130 knowledgeable volunteers in its International Support Network, serving 111 cities worldwide, organizing local support groups and providing telephone support. NAAF highlighted support volunteers in each quarterly newsletter. • Alopecia areata kids are awesome . and they know it! That’s why NAAF offered a wide selection of resources just for them, including a nine-minute DVD/video that kids could share with family, friends, and schoolmates; a school guide for use by parents and teachers; a bibliography of books for kids with alopecia areata; children’s support groups; our Children’s Conference Camp attended by 250 kids ages 5 to 17; our Pen Pals program; secure and private message boards for children and teens; a special KidNet section of the NAAF Newsletter; and brochures for parents and kids. • 1,300 participants, both adults and kids, actively took part in our Pen Pal program. (And you can too!) • NAAF helped more people because we had more people helping us, in the form of thousands of volunteers worldwide. • Our quarterly award-winning NAAF Newsletter kept you updated. • 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) were all revised to be more up-to-date and easier to read. “NAAF really changes lives. If you had never started up NAAF, I probably would feel so alone in the world, thinking, “Am I the only one? Why did God choose me, out of the billions of people in the world?” But making all these friends from NAAF really has changed my life. Outside of NAAF, I am still very close to them.