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2020 Virtual Conference recap

SAF’s First Virtual Patient-Doctor Conference
Date: July 18, 2020
Location: Virtual
Presentation Agenda

Patient Testimonials:

I can’t thank you enough for making this happen. My had my teenage son put the conference up on the TV in the living room through his Playstation 4, so I was able to sit on the couch and enjoy it on the big screen. It was like being at an in-person conference without having to wear high heels! Every presentation was excellent, I felt like every presenter truly cared. The “Novel Disease Pathways in Scarring Alopecia Revealed by Gene Expression Analysis by Dr. Christiano was not only fascinating, but groundbreaking in my opinion. Thank you so much for this enlightening day of learning.

I live in a very remote area of the US.  It would be very difficult for me to attend this conference in person.  I appreciated the planning and time that went into this conference – Thank you!

I enjoyed all topics! Everyone was extremely knowledgeable and clear in their presentations. I honestly only paid for a ticket to support this content, and I had a particular interest in the Radical Acceptance topic, because I am at that stage and am not pursuing therapy or treatment of any kind, but I found every topic fascinating and engaging. I feel like I learned something from everyone and I could explain a lot of it to my partner tonight when he got home – a sign of comprehension and a testament to the experts’ presentations! Well done to all and thank you!

I’m an active member of the Boston area SAF and your work has been a lifeline for me. Thank you so much for all the work you do. As a first step out into the remote world of conferences, you did an excellent job!

I’m so excited about how well this went.  Congratulations, Jean, Colleen, and all who contributed to the success.  I hope we have more of these.  I so appreciate the generosity of the presenters.  We owe them a great deal for the way they have given so much to all of us!

Very pleased with this conference!  Virtual training makes participation affordable. I have not been able to attend these previously due to both costs and time constraints. Thank you…..thank you….thank you! Well done, SAF!

Thank you! I was diagnosed a month ago – with first symptoms occurring after testing positive for COVID – I feel blessed that this great information was available to me so quickly after being diagnosed. 

Thank you for everything that SAF is doing to advance the knowledge on scarring alopecia.  As a patient it is very comforting to know that someone is advocating for us with research and treatment.  Without the wonderful staff at SAF we would all be left out in the cold. Thanks 🙂

On Saturday, July 18, 2020, SAF hosted it’s first-ever virtual conference from 11:00 am EST to 4:00 pm EST. It was a day packed with a full agenda of topics and exceptional speakers. Each lecture was followed by a live question-and-answer segment from the audience. There were so many intelligent and relevant questions, that time simply would not allow for each question to be addressed. SAF knows how important getting this information is to our members, so we are planning to ensure more opportunities to connect with these knowledge physicians.

The morning kicked off with some brief comments from Jean Pickford, Executive Director and Rita Wanser, President of SAF’s Board of Directors. The first speaker was Dr. Wilma Bergfeld, who is a Professor of Dermatology at the Cleveland Clinic and is world renowned for her work in hair disorders and dermatopathology. Dr. Bergfeld also serves as Vice President of SAF. Dr. Bergfeld presented an overview of scarring alopecia and explained the commonalities and differences between all the different types. Dr. Bergfeld was followed by Dr. Maryanne Senna, a board certified dermatologist at Harvard Medical School and co-director of the Hair Loss Clinic at Mass General in Boston. Dr. Senna is also a member of SAF’s board of directors and one of our most active voices in the medical community. Dr. Senna presented our longest lecture of the day on the management and treatment of scarring alopecia, which was followed by many more questions than we could fit in to answer!

The next segment featured research lectures from Drs. Angela Christiano and Lindsey Bordone, both from Columbia University. Dr. Christiano is a Professor of Dermatology and Genetics and has been studying hair loss disorders for over 20 years. Dr. Christiano presented her work about novel disease pathways that are revealed by gene expression analysis. She used the analogy of making a fruit smoothie to make this complex topic more easily understandable. Next, Dr. Lindsey Bordone, a board-certified dermatologist whose research focuses on inflammatory hair loss, including alopecia areata and lichen planopilaris, presented her work JAK inhibitors and experiences with COVID-19 alopecia patients.

Our next speaker was Dr. Nicole Rogers, a renowned hair transplant surgeon and dermatologist with a thriving practice in New Orleans. Dr. Rogers has successfully treated hundreds of patients with hair loss and also serves on SAF’s board of directors as secretary. Dr. Rogers spoke about surgical treatments for patients with scarring alopecia, emphasizing that not every scarring alopecia patient can be a candidate for this type of treatment. However, it may be an option to look into at some point in your hair loss journey.

The conference continued with a great presentation from Dr. Jerry Shapiro about finding the right dermatologist. Dr. Shapiro has been in practice for over 30 years and devoted his career to the field of hair loss. He is a Professor of Dermatology at New York University School of Medicine and also a member of SAF’s Medical & Scientific Advisory Board. The biggest takeaway from Dr. Shapiro’s lecture was scarring alopecia is a “follicular emergency” and should be taken very seriously by your dermatologist.

Drs. Maria Hordinsky and Ronda Farah, both from the University of Minnesota, were up next on the agenda. Dr. Hordinsky is Chair of the Department of Dermatology and globally recognized for her expertise and research in hair diseases. She also serves on SAF’s Board of Directors and is instrumental in guiding the organization medically. She spoke about platelet-rich plasma, aka PRP, and the emerging science of this type of treatment for hair loss. Although it’s not quite ready for scarring alopecia, her lecture provided promise and hope for the future. Dr. Hordinsky was followed by Dr. Ronda Farah, Assistant Professor in the Department of Dermatology, and an expert on the use of hair lasers. Dr. Farah educated the audience about the different types of lasers and their frequencies, along with recent studies on their effectiveness in re-growing hair.

Up to this point, the conference focused on mostly medical and science information. But as everyone knows, scarring alopecia has two sides…the medical side and the emotional side. Our final presenter of the day was Andrea Furgala who spoke to the audience about the role of radical acceptance in managing a chronic condition. Andrea has a master’s degree in social work and worked as a child and family therapist, where she has been trained in Dialectical Behavioral Therapy (DBT). Andrea was diagnosed with LPP in 2015 after 5 years of extreme burning and itching. Concepts from DBT have helped Andrea manage the emotional side of LPP along with two other chronic conditions. She explained the emotional pathway from getting your diagnosis to a point of acceptance in a logical and comprehensible way.

Many, many thanks to our exceptional panel of speakers and our producer, Grade A Communications, for their time, expertise and generous support of SAF and our members.

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