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NAAF - March 2014

 

Enews Beneath the surface 2

March 2014                                                 

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NAAF Research Summit Grant Receives Highest Score from Reviewers at the National Institutes of Health (NIH)

With three outstanding Medical and Scientific Co-Chairs, NAAF submitted an application to the National Institute of Arthritis and Musculoskeletal and Skin Diseases within the NIH for financial support of our next research summit.   Our application received a ten, the best score, from the Scientific Reviewers and we are hopeful that NIAMS and other Institutes and Centers within the NIH will be among our sponsors.

The summit “From Targets to Treatments: Bridging Autoimmune Research to Advance Understanding of Alopecia Areata” will be held in Bethesda, MD, December 4-5, 2014.  NAAF Associate Program Director and Research Coordinator, Abby Ellison and Chief Program Officer, Dory Kranz are working closely with Medical and Scientific Co-Chairs Dr. David Norris (UC Denver, CO), Dr. Julian Mackay-Wiggin (Columbia University, NY) and Dr. Jeff Frelinger (University of Arizona) to create an engaging agenda that will 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. 

NAAF Helps The Doctors with Alopecia Areata Episode

lisa & Danielle the doctorsIn addition to providing up to the moment information on alopecia areata, syndicated medical series The Doctors asked NAAF to provide an articulate Southern California alopecia areata patient to discuss their experience.  Without hesitation, we suggested Danielle Candray, a San Bernardino high school student, who you may recall wrote movingly of her life with alopecia areata in our Fall 2013 newsletter. 

Danielle eagerly agreed and, chaperoned by her proud mother Anna, went to the television studios and joined actress Georgia Van Cuylenburg to honestly discuss their alopecia areata experiences while also assuring the hosts they were both coping extremely well.  “It’s not a big deal anymore,” said Danielle, backed up by Georgia who sagely added, “We are not defined by our hair.”  The emotional highlight of the episode came when the two women removed their wigs and received standing ovations.  “The best part is seeing the two of you embrace this,” said host Travis Stork.  As an added surprise, Lisa Vanderpump  (The Real Housewives of Beverly HillsVanderpump Rules) was brought out along with her famous pooch, Giggy, who himself has alopecia areata.  Lisa, who attended last summer’s Annual Conference in St. Louis, made sure to mention her support of the National Alopecia Areata Foundation.   We wish to thank The Doctorsfor producing this important episode, and Danielle for being such an eloquent spokesperson for those with alopecia areata.

NAAF Conference Coming Soon - Don’t Miss Early Bird Registration!

2013 St. Louis 3 boysThe 29th Annual NAAF International Patient and Family Conference promises to be so big, we could only have it in Texas!  San Antonio will provide a glorious setting, especially for our Tortoise & Hair Conference Walk around one of our nation’s most historic sites, The Alamo.  We’ll also have support sessions for all ages, special guest speakers, exhibitor displays, a Cosmetic Demonstration Workshop, the Children’s Alopecia Areata Conference Camp, an Ask the Experts panel, an Awareness and Advocacy Workshop, the Costume Dance Party: Denim & Diamonds, plus lots more! 

Told you it was big…and so are the savings if you register TODAY!  Early bird registrants pay only $240 for the first person, $180 for each additional person, and kids pre-K or younger come free!  But you only have ‘til Monday, May 19, to take advantage of this special offer so register now!  And don’t forget to sign up for the Tortoise & Hair Conference Walk so you can raise funds for NAAF while walking around one of America’s most famous landmarks.  

Bring the Conference Home with a Virtual Tortoise & Hair™

Can’t make it to San Antonio?  Let San Antonio come to you!  That’s right, partner.  You can still participate in the Tortoise & Hair™ walk in two ways:

  • Create a donation page that allows you to have a virtual Tortoise & Hair™ event.
  • Round up your friends and hold your own walk on Saturday, June 28, the same day as the Conference walk around the Alamo, and know you’re walking with thousands of others!

Either way will be a whole heap of fun and best of all you’ll be raising funds that go to support NAAF in its mission to provide awareness, support and research for the alopecia areata community.  Contact us today at 415-472-3780 to set up your virtual Tortoise & Hair™ donation page or your own local Tortoise & Hair™ walk.  Why, it’s just like having a little bit of Texas in your backyard!

Two NAAF Fundraisers on Same Weekend Raise over $25,000!

quarles bowling for alopeciaOn the night of Friday, March 7, Erica Gibson hosted a wine tasting fundraiser at Grapevine Wines and Cheese in St. Louis, Missouri.  The event was a huge success, well attended and enjoyed by all.  Not 24 hours later In Arlington, Virginia, Brian and Danielle Quarles along with Carol Chin-Fatt, hosted their Bowling for Baldness fundraiser.  In addition to bowling, there was a silent auction featuring over 90 highly sought items from local businesses including premium offerings from local golf courses, wineries and high-end Washington DC restaurants.  Additionally, five corporate sponsors made donations directly to NAAF in exchange for logo placement and marketing opportunities associated with the event.  Altogether these two creative and fun events raised over $25,000.  As we often say, “Think about what you like to do…and do it for NAAF.”  That’s what Erica, Brian, Danielle and Carol did, and you can too!  Call us at 415-472-3780, tell us what kind of fundraiser you’d like to do, and we’ll help make it possible.

NAAF Support Group Leader Spotlight – Carmen Hamza

Carmen HamzaThe Miami alopecia areata community has a real dynamo of a support group leader in Carmen Hamza.  Though her NAAF support group is still less than a year old, Carmen has already organized three successful awareness events with local sports teams:    Team Up  with the Marlins baseball team, a Charlie Villanueva Meet & Greet with local NBA team the Heat, and even a group outing to a Dolphins football game.  She has overseen multiple group meetings and fundraisers, and is always looking for that next great opportunity to provide companionship and information to her group members.  “Being a support group leader has given so much to me emotionally,” Carmen tells us. “I learn something helpful and positive from every single group member.   Being a part of the group has changed my life and I love it!”  Her group even has its own motto:  "We may have lost our hair, but not our voices.”   Want to be a NAAF support group leader like Carmen?  Contact Laura Ralph at 415-472-3780.  Visit our website to find your nearest NAAF support group.

Marketplace Spotlight for March 2014 - Wigs by Patti's Pearls

Pattis PearlsWigs by Patti's Pearls is a boutique website geared towards women with hair loss that sells both human hair and synthetic wigs from several different popular manufacturers. But unlike most other wig stores and websites, Patti offers her cutting, sewing and styling services to give each and every wig a personalized fit.  You will be amazed at how natural and real your wig will look and feel.

Their Founder, Patti Joyce, is a cancer survivor and realized through her own hair loss that there was a tremendous need for high quality, comfortable and stylish wigs presented in a caring and loving environment, all at an affordable price.  Patti has been given the special opportunity through her experience as a wig designer and stylist to make a difference during a time when women need all the self-confidence and courage that they can muster.   Please enter the code 'NAAF' in the coupon code box.

www.wigsbypattispearls.com
800.670.3292 

See more Products for People with Alopecia Areata. 

Best Wishes,

 

Vicki Kalabokes, President & CEO

P.S. If you have not registered yet for the 2014 Annual NAAF International Patient and Family  Conference in San Antonio, June 26-29, be sure to do it right away. Don't delay as the early bird rates end May 19th!

 

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