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NAAF - February 2014

 

Enews Beneath the surface 2

February 2014                                                 

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Three Clinical Trials Underway at Columbia

[object Object]Three alopecia areata clinical trials are getting underway through New York Presbyterian Hospital at Columbia University led by NAAF Advisory Council member Dr. Julian Mackay-Wiggan.  Strict rules around the way potential participants are informed about clinical trial opportunities require us to use the specific wording approved by the Institutional Review Board (IRB) at Columbia.  Excerpts from these IRB-approved study announcements are below: 

  • Intralesional steroids are the most commonly used treatment for alopecia areata, yet much remains unknown about the risks and benefits of different doses of intralesional steroids. The goal of this study is to answer some of those questions.  We are seeking men & women, at least 18 years old, to participate in a research study of intralesional injections of steroids versus inactive saline (salt water) for the treatment of Alopecia areata.
  • Many people in the U.S. suffer from alopecia areata, yet treatment options are limited and sometimes painful. The goal of this study is to test a medication, given as a subcutaneous injection that acts on the immune system and may reverse hair loss. We are seeking men & women, at least 18 years old, to participate in a research study of Abatacept for the treatment of Alopecia areata. This subcutaneous medication has been used to safely and successfully treat other diseases, and is now being newly tested for treatment of Alopecia Areata. 
  • Many people in the U.S. suffer from alopecia areata, yet treatment options are limited and sometimes painful. The goal of this study is to test a new medication taken as a pill that acts on the immune system and may reverse hair loss. We are seeking men & women, at least 18 years old, to participate in a research study of Ruxolitinib for the treatment of Alopecia areata. This is an oral medication has been used to safely and successfully treat other diseases, and is now being newly tested for treatment of Alopecia Areata.

Please visit the NAAF Research page on our website for links to complete flyers with contact information for each study.

The Alopecia Areata Registry, Biobank and Clinical Trials Network (Registry) will be utilized to solicit participants, so keep an eye out if you are a member in the greater New York metropolitan area.  If you are not near New York, but would like to help with future clinical trials, please join the Registry and add to our nearly 10,000 registrants.

Disclaimer:
NAAF provides research notices as an informational service to its members. NAAF is not conducting the study. This information does not represent a NAAF endorsement, but rather makes you aware that clinical studies are available for your participation if you choose. If you are presently under the care of a physician for alopecia areata, or other conditions, you should discuss this study with your doctor before altering your treatment program. NAAF is not responsible for any adverse outcomes.

Legislative Liaisons Advocate On Behalf of Alopecia Areata Community

During Congress’s April recess, a period also known as Constituent Work Week or District Work Period, Alopecia Areata Legislative Liaisons will meet with their representatives and senators in local district offices.  The Alopecia Areata Legislative Liaisons, accompanied by family and support group members, will ask their representatives to support legislative policies which can positively affect the alopecia areata community.  They will ask their lawmakers to a) advance medical research through continued and robust funding of the National Institutes of Health (NIH), b) facilitate treatment development by encouraging the Food and Drug Administration (FDA) to incorporate the alopecia areata patient perspective into regulatory decision making, and c) improve patient care by encouraging the Centers for Medicare and Medicaid Services (CMS) to change its present policy so the Medicare benefit would be available for those who require cranial prothestics as a result of alopecia areata.  It is efforts such as these that move alopecia areata forward in the public policy arena.  If you’re interested in becoming an Alopecia Areata Legislative Liaison, please email Gary Sherwood or call him at 415.472-3780.

New Webinar!  How to Low-Impact Fundraise!

Want to raise awareness of alopecia areata and money for NAAF…but you don’t want to host a big event?  Our newest webinar, hosted by Laura Ralph and Gary Sherwood, will teach you all the small-scale but effective ways you can fundraise.  These are easy activities you can do at home, at school, and in the workplace.  The all-new "How to Low-Impact Fundraise" webinar will be Tuesday, June 3, 3:00PM (PDT).  Sign up now and learn how to put the “fun” in your fundraiser!  

Bring Your Kids to the Children’s Conference Camp in June

kids camp 2013 3 kidsHaving alopecia areata isn’t always easy, especially for children.  That’s why our Alopecia Areata Children’s Conference Camp is such a special place for kids with alopecia areata.  Ably administered by the trained professionals of Corporate Kids Events, Inc., the Children’s Conference Camp provides a wealth of activities, new friendships and lifelong memories.  It is truly life-changing and reminds kids with alopecia areata they are not alone.  Be sure to register yourself and your child when registering for the 29th Annual NAAF Patient Conference, “Spur the Cure,” to be held June 26 – June 29, 2013 at the Hyatt Regency San Antonio Riverwalk, San Antonio, TX.  Register online at www.naaf.org/conferenceregistration.  If you prefer to register by mail you can print the pages here and mail it in, or request a conference packet by calling the NAAF office at 415.472.3780.  And don’t forget:  registering for the conference does not secure a hotel room for you. Please contact the hotel at 314.655.1234 as soon as possible to assure you will have accommodations while in San Antonio. Availability for rooms within the NAAF room block is first come, first serve, and they go quickly! 

Honor Vicki Kalabokes by Attending Celebration and Donating to NAAF Through a Legacy Fund in Her Honor

As Vicki Kalabokes approaches retirement this March, what better way to honor all she’s done for NAAF than with an epic celebration in NAAF’s backyard, and donating to NAAF through Vicki’s Legacy Fund!

The Gala-bokes: A Celebration Dance Honoring Vicki for Her Contributions to the Alopecia Areata Community
Friday, April 4, in Mill Valley, California

Vicki and David 2011 conferenceVicki loves to dance—and she wants everyone to come to dance with her from 8:00PM to 11:30PM on Friday, April 4, at the Mill Valley Community Center in Mill Valley, California. Food and drinks will be served, and music will be provided by the best R&B band in the Bay area—Pride and Joy. Tickets are $100 per person ($60 is tax-deductible). A limited number of free tickets have been underwritten and are available – please call the NAAF offices for details.  Additional donations to NAAF through Vicki’s Legacy Fund will be greatly appreciated.  Please RSVP today if you would like to be on the invitation list to receive information about the event, hotel blocks, etc.

For those staying overnight for the festivities, online reservations are easy! Simply click on the link below which takes you to the Larkspur Courtyard by Marriott's reservation page.  The reservation code for the party will already be populated in the appropriate field.  All you need to do is enter your arrival date to begin the reservation process.
Book your group rate: Vicki Kalabokes Retirement Party>>

Or you can call (800) 321-2211 and ask for the Vicki Kalabokes Retirement Party to receive the discounted group rate.  Please remember to make your reservations before the cutoff date of Friday, March 7, 2014, to receive the discounted group rate.  If needed, you may contact Amy Stone, Property Coordinator at Larkspur Courtyard by Marriott, to add additional rooms to your block (based on availability).  Amy can be reached at 415-925-1800 x628.

NAAF Board and Staff Set 2014 Strategic Priorities 

Over the course of two richly orchestrated days in late January, members of NAAF’s Board of Directors and staff met in San Francisco to map strategic priorities for the coming year.  Our commitment remains strong and focused in three core mission areas: patient & family support to improve the quality of people’s lives right now; raising awareness & advocacy to increase federal research support and improve healthcare reimbursement; and accelerating research toward a cure through the Alopecia Areata Treatment Development Program.

Support is Just a Click Away

Looking for a support group meeting in your area?  Or maybe a friendly voice for one-on-one phone support? Visit our Support & Resources page.You’ll be taken to a listing of all current support group and telephone support contacts in your state, along with the cities they serve.  If you don’t see a support group in your immediate area, don’t be discouraged!  Feel free to contact any telephone support contact person in any state.  New support groups and telephone support contacts are added every month.  Check back often!  And if you’re looking for a support group meeting or other NAAF event in your area, please visit our Events Calendarand Facebook page, or follow us on Twitter to see when and where the next one is near you.   

Marketplace Spotlight for February 2014 - Boldly Bald Women

Boldly Bald WomenWhen Pam Fitros was diagnosed with ovarian cancer she joked that the benefit of chemotherapy was the end of bad hair days. However, Pam’s cancer was caught so early she didn’t need chemo or radiation. She didn’t lose her hair. Be careful what you wish for…a few years later Pam lost all her body hair from alopecia areata universalis. She loved bald, but hated wigs and decided if it was okay for men to shine up their bald heads and strut their stuff, it was time for the world to let go of the perception of bald women as sick or shameful and make room for Boldly Bald Women.

What is the best source of how to deal with female baldness? Bald women of course! Pam gathered the stories of twenty five bald women and wove them into an informative, entertaining, endearing Amazon Best Seller book - a guide for women facing hair loss and their supporters.

One of the story contributors was jewelry designer Joyce Brier, who had been living with alopecia areata universalis for years. Joyce turned Pam’s vision of lightweight kicky earrings to give bald women an extra boost of confidence and pizzazz into reality. Boldly Bald Jewelry was born.

www.boldlybaldwomen.com

See more Products for People with Alopecia Areata. 

Best Wishes,

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Maureen Mcgettigan, Board Chair

 

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