2023 President & Executive Director Message

Dear SAF Community,

Today, on behalf of the SAF Board, I want to express our heartfelt gratitude to our Executive Director, Jean Pickford, for her unwavering dedication and tireless efforts over the past six years. Without Jean’s commitment, SAF wouldn’t be where it is today.

As someone who has personally lived with scarring alopecia for 15 years, I deeply understand the financial challenges that come with diagnosis, treatment, and medications. We’ve listened to your concerns about membership fees and program charges, and we’re committed to making a change.

Moving forward: 🚫 There will be no cost to be a member of SAF. 🚫 We will not charge for online programming.

However, it’s crucial to note that approximately 60% of SAF’s operating budget relies on donations. Without your support, SAF, the only organization solely dedicated to improving the understanding of scarring alopecia, could cease to exist.

I urge each of you to contribute what you can to SAF. Whether it’s a one-time gift or a monthly recurring donation, every contribution, regardless of its size, is vital and immensely appreciated. You can be the pebble that starts the ripple, creating the tidal wave of positive change. If you choose monthly giving, remember that you can cancel at any time.

Thank you for your dedication to SAF and your continued support. With your help, we will keep providing you with valuable events and information about scarring alopecia, making a real difference for those living with this challenging condition.

Warm regards,

Larraine Bernstein President, SAF

As the leaves begin to change and cooler days approach, it’s the perfect time for us to connect and share some exciting updates. We appreciate your positive response to our brief, frequent e-newsletters, so let’s keep it short, sincere, and important!

Here’s what SAF has been up to:

1️⃣ Building Powerful Partnerships: This year, we’ve been focused on building partnerships with industry and pharmaceutical leaders, and it’s paying off. SAF is now in collaboration with L’Oreal, Pfizer, Eli Lilly, and Mt. Sinai Medical Center, with more exciting collaborations in the works.

2️⃣ Sharing Valuable Research: We’re submitting abstracts for poster and oral presentations at industry meetings, sharing insights from our CAPAIR study. “The Voice and Burden of Scarring Alopecia” questionnaire is grabbing attention from pharma and industry leaders.

3️⃣ Raising Awareness: We’re working with an expert physician-scientist committee to quantify the true prevalence of scarring alopecia. The patient population is higher than reported, and we’re committed to shedding light on this issue.

4️⃣ Advocacy for Insurance Coverage: We’re advocating for official ICD-10 medical coding for FFA and CCCA, making treatments eligible for insurance reimbursement.

5️⃣ Educational Webinars: Our recent webinar with Dr. Keira Barr was a success. Stay tuned for another live webinar this fall, where you can meet hair loss physicians, join breakout sessions, and participate in live Q&A.

6️⃣ Supportive Community: We continue to host monthly online support meetups, with growing attendance.

7️⃣ Stay Informed with “The Buzz”: Don’t miss our biweekly e-newsletter, “The Buzz,” featuring SAF-driven initiatives and important scarring alopecia topics.