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NAAF - February 2017
 

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Looking Forward to a Great 2017!
We at the National Alopecia Areata Foundation are thrilled to enter 2017 on a wave of robust achievement and innovative action. This year will see publication of our Research Summit discoveries, further development of our Health and Research Ambassador (HARA) program, our first post-election Capitol Hill Day, a conference in one of America’s most vibrant cities, and our long-anticipated public meeting with the U.S. Food and Drug Administration (FDA). As we have for over three-and-a-half decades, NAAF continues to provide unrivalled awareness, support and research to the alopecia areata community. And we’re so proud and privileged to have you as part of our family!

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Help Inform FDA’s Patient-Focused Drug Development Meeting
You can be a part of the FDA’s Patient-Focused Drug Development (PFDD) meeting on alopecia areata to enhance regulatory assessment and help innovative new drugs receive approval. This meeting is an exciting opportunity for patients to bring their voice to the FDA and the drug development process.

There are several ways to get involved, such as participating in a brief online survey about the symptoms of alopecia areata and current treatment approaches, submitting written testimony for the FDA PFDD meeting and being part of the HearUs Campaign when it begins!  If you are interested in receiving updates about opportunities for your involvement, sign up here: www.naaf.org/help-inform-fdas-patient-focused-drug-development-meeting

Alopecia areata has been misperceived as a “cosmetic disease” because its primary burden is not physical pain or incapacity and it is not life-threatening. However, for many people with alopecia areata, there is emotional, social and economic suffering. The stigma of living with visible difference negatively impacts the lives of many. Therefore, over the coming months, in preparation for this highly coveted meeting, we now need to articulate this suffering in order to educate the FDA about the very real burdens of this disease.

We will share further information, including the date of the alopecia areata meeting which is yet to be set, as we learn more in the coming weeks and months.

New Research Trial Seeks Your Participation
A research study being conducted by researchers from the Department of Psychology at the University of Sheffield, in England, is seeking to find out whether a self-help intervention is effective for adults with a visible skin difference. The self-help intervention aims to help people build their confidence in social situations.

If your confidence in social situations is affected by your visible skin difference and you are aged 18 or over, you are eligible to participate.

Participants in the study will be asked to complete a set of questionnaires. These will be repeated once during the course of the study, to see whether the self-help is effective. You will receive the self-help intervention as a PDF document either straight away or after a waiting period.

To learn more, go to www.naaf.org/clinical-research/self-help-for-visible-skin-difference-in-adults
 

 
How a Support Group Just for Kids Works?
Melody and Ryan Sandell are nothing if not busy. In addition to being Legislative Liaisons, the pair also leads the Minneapolis Support Group for kids. Here Melody describes how her group works and the way it differs from a traditional support group: 

“I’m Melody Sandell, and I and my husband, Ryan, lead the Minneapolis Support Group for kids and teens. We have a daughter, Kayleigh, who is 10 and has had alopecia areata since she was 18 months old, and a son, Ty, who is 12 and is her biggest advocate. Our group is a subset of the larger Minneapolis Support Group led by Heidi Odmark. 

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Heidi and I work together to help support those with alopecia areata in the Minneapolis area; Heidi coordinates the larger group activities where everyone is invited and I coordinate activities specifically aimed towards kids. When our daughter, Kayleigh, was diagnosed with alopecia areata we heard about the support group from our dermatologist, Dr. Maria Hordinsky.
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We were thrilled to meet others with alopecia areata, but we quickly noticed the issues we were experiencing with our young daughter were not quite the same as those the adults in the group were facing. We loved to hear their perspectives, listen to them share their knowledge, and receive the love and support they offered. However, we wanted our daughter to be able to meet children her age with alopecia areata to form relationships and friendships that would be fun for now, but really set the stage for support in the future. Read the full article here.


If you would like to start a support group in your community, please contact Laura Ralph at 415-472-3780 or email laura@naaf.org. 

Ryan Shazier Makes Time for a Fan
Those who attended last year’s NAAF patient conference in Washington, DC, will not soon forget Ryan Shazier’s closing session address. Since then, the inside linebacker for the Pittsburgh Steelers has been a major inspiration to those with alopecia areata, including 14-year-old Scott Weitman, who shares this wonderful story:

“For my birthday, which is Christmas Eve, we celebrated a little early with a family road trip to Cincinnati to see the Steelers play the Bengals on December 18th. I have been a Steelers fan for a long time and one of my favorite players is Ryan Shazier. I was a Ryan Shazier fan before I even knew he had alopecia. It was my first time going to a Steelers game, and I got a new Shazier jersey as a birthday gift. As if that wasn’t great enough, I also had the chance to meet Ryan Shazier before the game. I wrote him a letter a few months before our trip, telling him that I was coming and that I had alopecia just like him and asking if I could meet him to shake his hand. It turned out to be the best Christmas and birthday gift ever! Read the full article on our website. 

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My Life, My Power, Miami – Learn to Love All Three at the 2017 NAAF Conference
Plan your 2017 family vacation to coincide with the 32nd Annual NAAF International Conference in Miami, Florida, from Thursday, June 22 to Sunday, June 25. This unforgettable experience will connect you with a network of individuals and families who share the same challenges as you, professional caregivers offering medical information and advice to better understand and manage alopecia areata, and expert researchers with the latest findings from NAAF’s Treatment Development Program. Plus, you’ll be in one of the world’s most exciting and diverse cities — an experience not to be missed! This four-day event is for people of all ages who have alopecia areata or care about someone who does.

Online registration begins soon! If you prefer to register by mail, please request a conference registration packet by emailing NAAF at 
info@naaf.org. You will automatically receive a registration packet in the mail if you attended a previous conference. And don’t forget: registering for the conference does not secure a hotel room. Please contact the hotel at 402-592-6464 as soon as possible to assure you will have accommodations while in Miami and to get the “National Alopecia Areata Foundation” group rate. Availability for rooms within the NAAF room block is first come, first serve, and they go quickly!

Online registration will be available very soon at 
www.naaf.org!  ?

Tortoise & Hair™ Takes a Stroll Along the Riverwalk
On this year’s Tortoise & Hair™ Conference Walk, you will trace Miami’s picturesque Riverwalk as you raise awareness of alopecia areata along with funds to benefit NAAF in our ongoing effort to provide awareness, support, and research for the alopecia areata community.

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There’s no entry fee, but each walker or family must have a pledge sheet with a minimum total donation of $25 per individual or $50 per family — and there will be amazing prizes for those who raise the most. Details and pledge sheets will be included in conference confirmation packets.
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Don’t think you’ll be going to the conference, but still want to participate in the walk? No problem! You can set up a donation page allowing you to hold your own virtual Tortoise & Hair™ right in your own hometown. Contact us at 415-472-3780, and we’ll get you set up. 

Monthly Giving Made Easy

Is one of your New Year’s Resolutions to have an impact in the life of someone with alopecia areata? If so, NAAF has an easy way to guarantee you’ll stick to the goal all year! By becoming a monthly donor, you agree to make ongoing monthly contributions in any amount, and NAAF will do the rest! Your monthly contribution will be automatically withdrawn from your bank account or credit card. Make your gift today as a monthly donorand feel an immediate sense of accomplishment. Thank you! 
 

Alopecia Areata Marketplace Product Spotlight 
In the book “Evan Meets Bucky Lee,” Evan is excited to meet the kids in his new neighborhood, until Bucky Lee picks on him for being bald. Suddenly, Evan realizes making friends may not be as easy as he thought. Just when Evan resolves to judge Bucky as a mean kid, his mom steps in with some wise words. Together, they learn a surprising truth about Bucky Lee … and about how to treat those who hurt us the most. Shortly after, another surprise unfolds, one that will challenge Evan to quickly choose what kind of friend he wants to be. 
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This book is for ages 3 to 8. Please enter the word “NAAF” in the promotion code box on the checkout page.

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When you indicate that you were referred to their company through the National Alopecia Areata Foundation, each company listed on the Alopecia Areata Marketplace has generously offered to contribute 10% percent of their sales to our organization -- so, please be sure to include a note every time you order that you found them through NAAF. ?
 

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Sincerely,

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Gary Sherwood
Communications Director

P.S. You can fight alopecia areata all year. Monthly giving is now so easy!?
 
 

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