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NAAF - July 2014
Enews Beneath the surface 2

JULY 2014                                                 

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Conference 2014 kids

29th Annual NAAF Conference Rings In New Era, Honors Past

The 29th Annual National Alopecia Areata Foundation Conference in San Antonio, Texas, reminded us what is best about NAAF’s traditions and the strengths of our community, while looking ahead to an exciting, fresh chapter of new ideas, new possibilities, and new achievements. New President & CEO Dory Kranz reminded us that leadership change is a natural reflection point.  We depend on your feedback to let us know what is working that we should continue and where there are opportunities for improvement.  So let us know your thoughts! Read our exclusive Conference coverage here.

Alopecia Areata Registry, Biobank & Clinical Trials Network Front and Center at Conference

Registry at ConferenceThe Alopecia Areata Registry, Biobank & Clinical Trials Network (Registry) collected 78 saliva samples from participants at the 29th Annual NAAF International Conference, including over 30 children. This data will help drive the future of alopecia areata research and accelerate the development of safe, effective treatments. The Registry is an organized network of centers that identify and register patients with alopecia areata, offering a powerful resource of clinical data available to investigators studying the disease and biopharmaceutical companies developing treatments. By collecting data about the genetic and environmental factors that predispose for alopecia areata, we hope to develop safe, effective treatments and ultimately a cure. If you or someone in your family has alopecia areata, please call Clinical Coordinator Joyce S. Osei at (713) 794-1442 or email her at JSOsei@mdanderson.org.  For more information on how to register please visit our website

Researcher Reports from Society for Pediatric Dermatology Meeting

NAAF provided Dr. Chauncey Caldwell, an alopecia areata researcher in Orlanda, FL, with a travel grant to present a poster at the 40th Annual Meeting of the Society for Pediatric Dermatology, July 9-12, in Coeur d’Alene, ID.  To read Dr. Caldwell’s account of the findings presented on the poster, please visit our website.

New Legislative Liaison Empowered by Meeting with Senator

Sarah Seward newerSarah Seward of Warrensburg, MO, had only recently become an Alopecia Areata Legislative Liaison (the first in her state!) when she secured a meeting with Senator Claire McCaskill’s office.  Here is how Sarah describes her experience: “I became interested in becoming a Legislative Liaison after seeing posts on NAAF's Facebook page.  The thought of me being able to communicate with members of congress to make a difference in our community was very intriguing.  I emailed Gary Sherwood at NAAF and he supplied me with tons of information and an impeccable amount of support to get things started.  After committing to this process I started out by emailing my district congresswoman.  After getting no response, I reached higher and emailed my senators.  I was contacted by Senator McCaskill's field representative and a meeting was set up very quickly.  Even though I was extremely nervous, I could not imagine the meeting going any better than it did.”  According to Sarah, Senator McCaskill’s representative was quite sympathetic to NAAF’s position on increased funding for the National Institutes of Health (NIH) and, with input from Missouri’s alopecia areata community, engaging CMS to craft a coverage benefit for cranial prosthetics that is both comprehensive and fair to the alopecia areata community.  Sarah concludes, “It is such an empowering feeling to not only educate others, but to have them hop on board to make amazing changes in our community.”  If you would like to learn more about the Legislative Liaison program, please contact Gary Sherwood at gary@naaf.org.  

Look At Us!  NAAF and Baseball Team Up for Alopecia Areata Awareness Month

team up flyer 2014For the 2014 season, the National Alopecia Areata Foundation once again partners with both Minor and Major League Baseball teams duringAlopecia Areata Awareness Month.  “Team Up for Alopecia Areata” returns as seventeen teams have already scheduled awareness events this September and the months leading up…but we want more!  Interested in getting involved with a Team Up event?

Here’s how!

  • If your local Minor or Major League Baseball team is participating, you can attend the selected game. Follow ourwebsiteFacebook, and Twitter for details.
  • Do you have a contact with your local team, but don’t see them on our calendar? Ask them to participate!  Most Minor League Baseball seasons end in early September, so if you are working with a Minor League team we encourage you to coordinate a day in late August.
  • Distribute our awareness bracelets.  This is a great idea no matter how small or large your event. We can also provide brochures if the team can provide an awareness table or booth.

And you don’t just have to do a baseball event.  Other sports also offer a great platform to spread awareness.  We also encourage other awareness and fundraising events such as Tortoise & Hair™ walks, bowl-a-thons, jeans days, and lots more! For more information on how you can get involved, contact NAAF Communications Director Gary Sherwood at gary@naaf.org. Check www.naaf.org and follow us on Twitter and Facebook  for frequent posts and updates.  Also check out our recorded webinars on our website Nuts & Bolts of Successful Fundraising & Awareness Events and How to Low Impact Fundraise!      

NAAF Support Group Leader Spotlight – Erika Kubat

Erika KubatErika Kubat’s 11-year-old daughter, Kayley, was diagnosed with alopecia areata five years ago.  Earlier this year, Erika became the Colorado kids alopecia areata support group leader.  While Erika is a fairly recent support group leader, she has already organized many events for the kids and families in her group.  She set about getting a current contact list and Facebook group page to connect parents as easily as possible. The Colorado kids group now has more than 30 families from all over the state.  They enjoyed a pool and pizza party in March, an outing to the park in June, and are looking forward to a day at Bear Creek Lake in August.  “Then we have our NAAF Rockies baseball game scheduled for September 16,” Erika says in anticipation of the Team Up event (see above story).   Erika wishes to give credit where it’s due; “So many parents have been great in helping plan this year’s activities.”  She gives a special shout out to Lisa Pizzo and Diane McGrew, who have been instrumental in the group for years “and welcomed me with open arms.”  You too can be a NAAF support group leader!  Contact Laura Ralph at 415-472-3780 to learn more. To find your nearest NAAF support group visit our website.

Marketplace Spotlight for June 2014 - The beaubeau® Scarf – “Hair loss never looked so chic” 

Beau Beau newI never planned to be bald, but like so much in life things happen that are out of our control. Twelve years ago, I was diagnosed with alopecia areata universalis.  I unwillingly surrendered my hair but I was determined not to surrender any more of myself.  It didn’t take long to discover that the world of fashion had not met up with the medical hair loss market. That is why I created the beaubeau® scarf, a comfortable, secure and fashionable alternative to wearing a wig.  The beaubeau® scarf comes in over 500 fabric choices from casual to elegant.   Say goodbye to rubber swim caps and swim in comfort and style in our fashionable reversible swimbeau®. Scarves are available in 4 sizes for women (PS, SM, ML &L) and girls sizes (SM & ML). Swimbeau’s are available in 3 sizes for women (PS, ML & L) and one-size-fits-all for girls.  Enter NAAF in the promotional code box at checkout and 4Women donates 10% back to NAAF.

www.4women.com
susan@4women.com
941.361.0250

See more Products for People with Alopecia Areata. 

Best Wishes,

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Gary Sherwood, Communications Director

P.S. Let us know what you’d like to do for Awareness Month! 

 

 

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