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NAAF - October 2014
Enews Beneath the surface 2

SEPTEMBER 2014                                                

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Friends,

Legislative Liaisons Return to Capitol Hill 

Advocacy Day 2014 Senate Hill Day

Left to Right: Aaron Williams, Lori Jacobi, Lucinda Beaty,Bob Flint, Sarah and Abby Chan, Marianne Peterson, Vicki Kalabokes, Bree Morse, Gary Sherwood, Jeanne Rappoport, Deirdre Nero and Dustin Lee

Hard to believe, but the Alopecia Areata Legislative Liaison program is already two years old and only continues to grow in size and efficacy.  To celebrate its second anniversary, fifteen Legislative Liaisons from 11 states joined NAAF’s Ambassador Vicki Kalabokes, Communications Director Gary Sherwood, and Chief Administrative Officer Jeanne Rappoport to meet with the health aides of thirty senators and congressional representatives at their offices in Washington, DC.  The Legislative Liaisons asked for their lawmakers’ support on advancing alopecia areata research and three critical components of the Alopecia Areata Treatment Development Program.  Read more here.

NAAF's New Home 

This month, the National Alopecia Areata Foundation moved to its beautiful new offices at 65 Mitchell Blvd, just up the block from our previous address in the Northern California town of San Rafael.  Our new space reflects the shared vision of the staff for a workspace that supports efficient, collaborative work and is beautiful, comfortable and healthy.  NAAF President & CEO Dory Kranz applied her own keen decorative eye as she consulted with the staff on the look of our new home.  “As ‘family’ is a hallmark of the of NAAF culture that we all value, we also aimed for a homey rather than industrial feel,” Dory explains.  “We created a space that reflects our shared commitment to envisioning and manifesting abundance for this foundation and the community.”  This was no mere indulgence on our part.  When we learned the office building which had served NAAF well for 12 years was going to be sold and our rents would go up considerably, we found a place that fits our current needs and growth plans better and actually costs us less each month.  “So we are being responsible stewards of our financial resources while also taking good care of our human resources.” Dory points out.  “A win-win for all!”  Next time you’re in San Rafael, stop in and see the new place! 

Bald Boogie Challenge Dances Alopecia Areata off the Floor!

bald boogie challengeReady. Set. Boogie!  This month, in celebration of Alopecia Areata Awareness Month, NAAF launched its first ever virtual fundraiser with the goals of raising awareness and $100,000 using a new virtual fundraising platform.  The results have been amazing!  Over 48 people created their own fundraising pages to share with family and friends.  As of this writing, we have raised 70% of our goal with $70,000 donated. The NAAF Board of Directors agreed to contribute $10,000 for every 100 participants and Dory Kranz offered to shave a patch of her hair each time we raise $10,000 (separate from the Board’s giving).  Over 325 participants have contributed and several of you shared short videos of yourselves boogying down!  Perhaps one of the most heartwarming parts of this campaign has been reading all of comments that participants share full of hope and support.  NAAF’s Chief Development Strategist Maureen Smith says, “Checking our Bald Boogie Home Page  is like a getting large dose of natural anti-depressants each day!”  

dory 3rd patchTo date, Dory Kranz has now shaved three patches of hair off her head.  She is sharing her motivation for doing this on her blog, Bald Boogie Challenge. Dory wishes to be a true ambassador for the community and raise understanding of skin disease, hair loss, autoimmune disease, emotional pain and the importance of de-stigmatizing difference.  Her bold approach has opened up a rich dialogue with you and we are all learning and growing from this experience.  “Fourteen days in,” Maureen tells supporters, “I would say your support, participation, and feedback has made this campaign not only a fundraising and awareness success but one that is spreading smiles, fun and healing as well.”  The Bald Boogie is so fun, we’re going to 21!  We’re extending the challenge another week to October 7, for a total of 21 dancing days.  Once we reach our goal of $100,000, Dory will have her head shaved live on KZST’s morning radio show to boost alopecia areata awareness. It really is a boogie wonderland!  

NAAF Receives Research Grant Applications in Response to 2014 Requests for Application (RFAs)

Research Grant Requests for Application (RFAs) were issued in April based on targeted research aims set forth at NAAF research summits. This year, NAAF received research grant applications for nearly every RFA category and has enlisted the help of Leidos, an organization with 20 years’ experience developing and executing rigorous peer and programmatic reviews.

Together, NAAF and Leidos have worked to improve the thoroughness and transparency of the peer review process. First, NAAF is leading the movement towards a patient-centered review process. Patient advocates, individuals with alopecia areata, caregivers and family members, will participate alongside experienced scientific reviewers as full voting members in the initial evaluation to score grants based on technical merit.  Including reviewers from the patient community in the process will provide an important bridge between those studying the disease and those personally affected by it. Secondly, NAAF has implemented the use of an online review system to document the process and improve efficiency. Lastly, NAAF has added a second tier review for programmatic balance.  This review will assess the highly scored grant applications and identify those that fit best within our existing portfolio, by evaluating research questions against the NAAF research priorities.   

Stepping Onto the Green Raises a LOT of Green

Golf Tourney Enews sept 2014

On September 15, 2014 Sara Dieringer of Centennial, CO, along with Cardel Homes hosted a golf tournament to benefit NAAF in honor of Alopecia Areata Awareness Month. It was a fantastic and successful event with 110 participants and a large number of corporate sponsors, bringing in a whopping $30,000.  Local news anchor Anne Trujillo, who has alopecia areata herself, was on hand that day along with Jennie Rivera, our Denver, CO support group leader and others from the group.  We wish to thank Sara and Cardel Homes, and everyone else who made this event a fundraising - and awareness - hole in one.  Do what you love and do it for NAAF and you will help spread the word about alopecia areata.  To schedule a fundraiser or awareness event in your community, contact Laura Ralph at 415-472-3780.     

Support Group Leader Spotlight – Roberta Miller

Roberta Miller is a family physician in Pittsburgh, Pennsylvania whose daughter developed alopecia areata at age 2.  Initially, Roberta’s daughter had patchy alopecia areata until she was in the 3rd grade when over the course of a year it gradually spread to include her entire scalp.  At the beginning of 4th grade she lost her eyelashes and eyebrows.  “I felt particularly frustrated by the lack of a fix for her hair loss,” Roberta recalls, “partly because as a medical professional it felt like I ought to be able to make this better.”  In 2012, Roberta and her family went to their first NAAF Conference in Washington, D.C. and finally felt some reassurance.  She continues that, “After our second conference I really wanted to connect with other people and families affected by alopecia in the Pittsburgh area, but found that there was no active support group.  So I got one started in the fall of 2013 and we have been having monthly meetings since (with a summer break).”  Roberta says things have been going well for the group.  “I have met some wonderful people through this – I feel truly blessed by the insight and compassion that our group members bring to each meeting.  We recently participated in the Team Up for Alopecia event with the Pittsburgh Pirates.”  Roberta’s group has big plans as well.  “A subset of our group is planning on starting to meet to plan fundraising activities.  And we are looking to hopefully have a local pediatric dermatologist come to one of our upcoming meetings.”  

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.

Beneath the Surface Enews to be Delivered Bi-monthly

We at NAAF are listening to our community.  A recent survey revealed that while you enjoy Beneath the Surface and find our electronic newsletter informative, you don’t need to be getting it as frequently as once a month.  Therefore, this will be our last monthly issue.  Our next issue will be emailed in November, and bi-monthly afterward.  Needless to say, should there be significant breaking news affecting the alopecia areata community during the intervals, we will report it as timely and as accurately as ever.  Thank you for your feedback and being part of the NAAF family. 

Warmly,

 

Dory signature

Dory Kranz, President & CEO

P.S. – Thanks to everyone who made this an amazing Alopecia Awareness Awareness Month!

 

 

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