Happy New Year from NAAF

Dear Friends,

As 2022 commences, we at the National Alopecia Areata Foundation look forward to a year of new achievements and actions, discoveries and dynamics, connections and conferences, and a bolder and broader awareness of alopecia areata. For 40 years, NAAF has provided unparalleled awareness, support and research to the alopecia areata community. Thank you for being such an important part of the NAAF family.

NAAF Welcomes New CEO

NAAF CEO and President, Nicole Friedland

The National Alopecia Areata Foundation (NAAF) Board of Directors is delighted to announce that it has named Nicole Friedland as its new President and Chief Executive Officer.  We conducted an extensive nationwide search and are so pleased that a leader with Nicole’s breadth and depth of experience will be joining us to lead NAAF into an even brighter future.  Nicole comes to us with over 30 years of disease-related not-for-profit experience in which she has demonstrated a record of success driving sustainable revenue growth, building high-performing teams and developing broad, lasting community and industry relationships.  

“We are thrilled to have a leader of Nicole’s caliber guiding NAAF into the future,” said Board Chair Ann Hollins.  “Nicole’s strategic vision, innovation and growth-mindset will bring great value to NAAF as we build upon our long legacy of providing the highest levels of service to our community. She brings passion, energy and engagement, and we are excited about our new journey together.”

Nicole’s three decades of experience includes over 20 years at Juvenile Diabetes Research Foundation (JDRF), most recently as their Executive Director of the Greater Bay Area Chapter for the last six years.  Working with the Type 1 diabetes community has given Nicole valuable autoimmune disease and patient-focused experience.  Prior to JDRF, she served as Division President for National Kidney Foundation, Chief Development Officer at ReSurge International, and Director of Development at Seva Foundation.  Over her career, Nicole has been nationally recognized and has demonstrated strong capabilities in the areas of strategic growth, planning and development, fundraising, innovation, clinical research, partner- and community-building and team development.  Nicole holds a Bachelor of Arts degree in Community Studies from University of California, Santa Cruz.

"A Community Reunited"
NAAF’s 40th Anniversary and In-Person Conference

Join us in celebrating NAAF’s 40th anniversary at "A Community Reunited", the annual NAAF International Conference, scheduled for Thursday, June 30, to Sunday, July 3, 2022, in Washington, DC. This unforgettable experience - our first in-person conference since 2019! - will connect you with a network of people who share similar challenges to those you may face.  Special guests and speakers will offer inspiration, professional caregivers will share medical information and advice to better understand and manage alopecia areata, and expert researchers will detail the latest findings of NAAF’s Treatment Development Program. A panel of researchers and representatives of companies pursuing treatments will provide the extraordinary opportunity to directly address questions to the very people most intimately involved in the search for treatments and a cure for alopecia areata. And we’re putting a new spin on the Tortoise & Hair™ Conference Walk which will better guarantee your safety and opportunity to see more of DC! This will be our first DC conference in six years, so we hope you can join us for this uniquely wonderful experience! Registration coming soon! Visit our website for more information.

MIT Chooses NAAF to Investigate Seal of Acceptance 

The Massachusetts Institute of Technology (MIT) has chosen NAAF to create a “Seal of Acceptance” program for large and ongoing revenue generation, providing expanded support and research funding and bolstering advocacy.  

MIT’s Volunteer Consulting Group leadership were very moved by the stories NAAF shared about the impact of alopecia areata, and the information and support we provide to our community. MIT is so enthusiastic they plan to assign 8 to 10 post-doctoral students from several universities to evaluate the possibility of NAAF having its own seal of approval and the viability and synthetization of the program as part of NAAF’s recurring revenue. MIT requested that interested students apply for these coveted volunteer consulting slots through their contacts with Ivy League schools. When MIT described NAAF to the potential consultants, and showed them the presentation NAAF did for Walgreens, MIT had the largest response in its history. 

Additionally, MIT requested interviews with select community members regarding what products and services are important to them. NAAF sent an email to our community asking for participants and received over 200 responses.

MIT is taking this project to fruition in just 8 weeks, providing NAAF the prestige of a partnership with such a renowned institution. We will keep you updated as this promising project moves forward.

Meet a Research Group Studying Alopecia Areata

Arash Mostaghimi, MD, MPA, MPH

NAAF works with academic researchers to support their studies of the alopecia areata community.  Learn about one of those research groups here and read about their new survey study below:

The Mostaghimi Lab is a clinical research team at the Department of Dermatology at Brigham and Women’s Hospital focused on determining the epidemiology, patient impact, and best practices for the treatment of medical dermatology conditions. In particular, the lab has a specific interest in alopecia areata (AA) and has evaluated the risk of skin cancer and cardiovascular disease in patients with AA, developed validated self-diagnostic tools, and studied the financial and mental health impact of AA on patients. In addition to conducting clinical research on alopecia areata, Dr. Arash Mostaghimi, a principal investigator of the team, is involved in several clinical trials testing new therapeutics for patients with AA.

New Survey Study on the Psychological
Impact of Alopecia Areata

A research study being conducted by Brigham and Women’s Hospital is seeking to learn more about understanding the psychological impact of alopecia areata. If you are a patient who is currently living in the United States, at least 18 years old, and has alopecia areata, your participation in a 5 to 7-minute online survey would be greatly appreciated. Your contribution will help improve the care patient receive for their alopecia.

Principal Investigator:  Arash Mostaghimi, MD, MPA, MPH, 617-264-5943

For more information, please contact Karen Lee at klee73@bwh.harvard.edu.

Massachusetts Legislation Needs YOUR Help!

Attention Massachusetts alopecia areata patients and families!  State Representative Jamie Belsito has asked for our assistance as she is trying very hard to move a bill out of committee that would greatly benefit the Massachusetts alopecia areata community by providing health insurance coverage for scalp and facial hair prosthesis.  

Once passed, Bill H.1135 (https://malegislature.gov/Bills/192/H1135) will provide health insurance coverage for scalp and facial hair prosthesis.  The bill is in the Joint Committee on Financial Services. 

Please contact the offices of the committee members and urge them to vote favorably on this bill so it will become law!  

Alopecia areata patients deserve this coverage!  Please reach out TODAY!

Do It for the Kids: Start a Children’s Support Group!

NAAF’s worldwide network of support groups are second to none in providing encouragement and guidance to alopecia areata patients of all ages. But sometimes kids need to get that support from people their own age. That’s where Children’s Support Groups are invaluable. As we go into this new year one of our goals is to increase the number of Children’s Support Groups across our network, and we’re hoping you can be a part of this. If you have a child under the age of 17 with alopecia areata and you both wish to help others with the disease, we encourage you to contact Director of Support & Education, Judy Williams at judy@naaf.org about starting a Children’s Support Group in your city or town. We’ll send you an application and discuss how you and your child will be able to benefit others with your experience and guidance. We’re looking forward to hearing from you! 

Support Group Leader Spotlight – Heather Stephen

Kenna and Heather Stephen

We asked Heather Stephen, who leads the Alopecia Kids support group in Colorado, to tell us why she became a Support Group Leader.

My name is Heather Stephen.  I am a Colorado Native; my husband and I have been married for 26 years and have 6 children.  

Our youngest daughter Kenna was diagnosed with Alopecia Areata/Universalis when she was 2 years old.  We found NAAF early on and connected with the Colorado Support Group for Kids and Parents. 

Our involvement with NAAF and The Colorado Support Group and annual conferences has been invaluable for Kenna, and our entire family.  We have made many great friends along the way. The community gave Kenna an opportunity to make friends and have fun being around other kids that “looked like her”.  As time went on Kenna became an example to the younger kids, of someone not just coping with alopecia, but thriving with it!  She is now 19, a full-time student at University of Denver and living life to the fullest.

For me as a parent, being involved in the NAAF community has been a lifeline. Sharing this journey with other parents has given us the ability to navigate the challenges of alopecia while helping and encouraging Kenna to become a confident, successful young woman. Being a part of this wonderful community has been a vital part of our journey.  I am looking forward to being the support group leader to give back to the community that has given so much to us!

If you are interested in joining a support group or starting a support group, please contact Judy Williams at judy@naaf.org.