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The 2010 conference was just overall a great experience just to see the enthusiasm of the doctors and I got goose bumps when Dr. Vera Price talked about the new research and conveyed her excitement about wanting to find a cure. Knowing that the people who are in the forefront of finding a cure are just as excited about doing it as the patients are about receiving it. – that was thrilling for me as a patient.
Sandra Dubose Gibson, patient
The conference in 2010 was just incredible. You had a network of support and it gave you the opportunity to really talk with people, get information and get the education you need. It allowed you to develop a sense of self-confidence and self-esteem about your disorder and to know that you don’t walk alone.
Mary Clay, patient
Congratulations on a very successful meeting. The sessions were terrific - and patients were aglow with hope and having been heard/shared their journey with those who truly understand.
Patient from Massachusetts
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What a great time was had by all and what a fantastic panel of doctors.
Patient from California
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So much information was packed into the conference and I met so many wonderful people that I didn’t want it to end. Many thanks to the doctors for taking the time to share their knowledge with us.
Patient from California
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Thank you for a great conference. The information that we received was well worth the travel to LA from NJ. I learned so much about alopecia. I feel more confident in supporting my daughter as she deals with this disease and I can already sense her greater confidence and empowerment in managing this very tough situation.
Patient’s mom
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Your conference was an amazing experience for me. Thank you for letting me participate and congratulations on an amazing success!
Patient’s friend
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WOW! The patient conference was truly wonderful and I got so much from it. It was honor to be there and to be a speaker. I was really inspired in many ways.
Nancy FitzGerald, CARF friend
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Congratulations on the wonderful 4th CARF International Conference. It all came together so well. The patients were so appreciative. The hair experts and other speakers were fabulous.
Lenore Kakita, MD
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What a wonderful, amazing, and eye-opening conference.
Nicole Rogers, MD
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Thanks and congratulations on a great conference.
Carolyn Goh, MD
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Congratulations for a wonderful and memorable conference. I think it surpassed everyone's expectations; all of my patients thanked me for persuading them to attend - they had no idea how helpful it would be. Everyone's comments gave the same positive and enthusiastic reaction.
Vera Price, MD
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What a great conference!
Pearl Grimes, MD_________________________________
In 2006, CARF received a Gold Triangle Award from the American Academy of Dermatology for its first patient conference, which was held in 2005 in San Francisco. (This first conference was very successful and followed by conferences in Minneapolis in 2007, Washington, DC, in 2008, and Los Angeles in September 2010.)
A letter from a 2005 conference participant.
My Experience
By Janet Wisian
I wanted to take this opportunity to thank Sheila Belkin and all the others involved in the foundation of C.A.R.F. (Cicatricial Alopecia Research Foundation). In the beginning, I thought it was pure luck that I happen to search the Internet and google "cicatricial alopecia," but after attending the first C.A.R.F. Conference, I truly believe it was the work of god.
My mom was diagnosed with Cicatricial Alopecia about one year ago and has been receiving treatment in San Antonio, Texas. She travels about once a month and receives injections in her head. About halfway through her treatments, I began to drive her to and from the appointments because it became hard to drive after the painful injections. At this time, I became involved and wanting to learn more about this condition. That is when I found C.A.R.F. I saw where they were having a conference in San Francisco, California with some of the top dermatologists researching this condition.
Within a week, mom and I had decided we would attend. Mom got in touch with a wonderful lady and they spoke for well over an hour. I will never forget the excitement in my mom’s voice when she called me and said that someone else knows what she is going through. At that point, all the reservations were made and we were headed to California. Once we stepped off the plane, our lives were forever changed, especially mom’s.
We were welcomed with open arms by several committee members. Mom and I decided to get a little touring in before the conference began. It was a beautiful day. That evening, we attended the social. Here we were two strangers from Texas not knowing anyone and the minute we walked in the door, it was like a brother and sisterhood forming. Everyone was so happy to meet each other. People attended from different part of the U.S.
For the first time, mom was face to face with others like her that she could now call friends. Over the next day and a half, many tears were shared, many hugs were bared and many friendships were born. So much knowledge was exchanged. Some seemed to have the condition worse than others, some had it longer than others and yet the bond between them was big! All the professionals that spoke gave hope to everyone knowing there are doctors out there looking for a cause and cure.
I have to say it was a life changing experience for both my mom and myself and to that, I am thankful beyond words. Atthe end of the conference, everyone was exchanging e-mails so that we can all stay in touch and be there for oneanother through the rough times and the good times. I have learned more about Cicatricial Alopecia and I hope to be involved with future conferences and to give encouragement to stay strong and know that you are not alone. My mom is continuing with her injection treatments and hopefully soon, there will be a known cure.
I encourage anyone who has a family member, neighbor or friends that has been diagnosed with Cicatricial Alopecia to please be there for support. It does make a difference.
Special thanks to Sheila for being probably the bravest lady I have ever met, next to my mom of course!
Love to you all,
Janet Wisian
Martindale, Texas
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Summary of Presentations from the
First International Cicatricial Alopecia Patient Conference
August 12-14, 2005
San Francisco, California
By Andrea Willey MD
Sheila Belkin
Through the visages of her own experience with scarring hair loss, artist, film producer, and co-founder of CARF, Sheila Belkin, described the development of CARF as an extraordinary journey marked by acceptance, creativity, and collaboration. With the perseverance of a Bavarian climber and the guiding promise that “there is hope, and things can be done,” the mission of CARF was created aiming to provide funds for research, find a treatment and cure for cicatricial alopecias, support patient education and advocacy, and raise public awareness. The First International Cicatricial Alopecia Patient Conference is a symbol of progress towards this goal. It marks the continuing achievements of CARF, including the formation of a scientific advisory board, the funding of two research projects, the development of the CARF website, the formation of alliances with dermatologic investigational societies, the initiation of a clinical database, and the development of a research colloquium . The CARF patient conference, the first of many future conferences, began the educational session with a series of lectures.
Jerry Shapiro MD, FRCPC
Dr. Shapiro defined cicatricial alopecias as a group of disorders characterized by the final common pathway of irreversible replacement of hair follicles by scar tissue. Dr. Shapiro distinguished the primary and secondary forms of cicatricial alopecia, and reviewed the clinical presentations of the predominantly lymphocytic and predominantly neutrophilic subtypes.
Vera Price MD, FRCPC
Dr. Price reviewed the epidemiology of cicatricial alopecia and current treatment protocols in her patient population in San Francisco. She noted that the prevalence varies amongst patient populations. Based on extrapolation of data from referral biopsy specimens evaluated by dermatopathologists at her institution, the prevalence of lichen planopilaris has been grossly estimated at 16,000 in the United States. Treatment approaches aimed at the identification and intervention of early disease were reviewed. The importance of objectively evaluating disease activity based on the symptoms, signs, and progression of disease was emphasized. Both established and developing protocols for the treatment of lymphocytic subtypes were discussed. These included the use of immunomodulating agents such as oral hydroxychloroquine, mycophenolate mofetil, cyclosporine, intralesional and topical corticosteroids. Management of neutrophilic subtypes emphasized the importance of cultures and sensitivities to guide selection of appropriate antibiotic therapy. The potential benefit of oral isotretinoin was mentioned.
Paradi Mirmirani, MD
Dr. Mirmirani outlined ongoing research efforts to identify the cause of cicatricial alopecia. Until recent years, largely descriptive data was available. While this is valuable in defining clinical subtypes, little has been accomplished to understand the cause of cicatricial alopecias. Recent work with the Absebia mouse model, in which a defect in sebaceous gland function leads to scarring alopecia, prompted questions as to whether abnormalities in the sebaceous gland play a role in cicatricial alopecia in humans. In a recent pilot study, in which scalp biopsies from twenty patients with predominantly lymphocytic and neutrophilic scarring alopecias were examined in a blinded manner, loss of sebaceous gland epithelium was identified associated with scarring alopecias. In the future, we hope to understand whether these changes are a primary or a secondary event.
At Case Western Reserve University, basic science research using gene array technology has been conducted to define the cell signaling involved in the immunologic response to scarring alopecia in the hair follicle. Whereas lymphocytes and neutrophils are cells used to classify cicatricial alopecias and determine treatment protocols, another cell type known as the macrophage has been found in large numbers in the scalp of patients with cicatricial alopecia. Initial gene array studies are trying to identify cytokines or signals involved in macrophage recruitment to the affected scalp. Expression of specific cytokines and regulatory genes were identified which help to explain the immunologic response to cicatricial alopecia. Continued research in this area may help us to better understand the cause of cicatricial alopecia and to identify better targets for specific treatments.
Ken Washenik MD, PhD
In his talk entitled Transplantation and Neogenesis, Dr. Washenik discussed the potential role of hair transplantation in patients affected with cicatricial alopecias. Dr. Washenik emphasized the indications and essential guidelines for hair restoration in this setting. Requisites for successful hair transplantation include sufficient donor hair and a focal area of need. With these requisites in mind, patients with any of the following are not candidates for hair transplantation: large area of need, inadequate donor area, or active disease. In addition, the following guidelines should be kept in mind for patients with cicatricial alopecia who are seeking hair transplantation:
1. there should be no scalp inflammation for greater than one year.
2. the possibility of disease recurrence after transplant exists.
3. there may be decreased graft survival due to scarring secondary to the primary cicatricial process.
4. grafting a test site before transplantation may be pursued to estimate patient response.
Dr. Washenik went on to discuss ongoing research in follicle neogenesis in which cultured follicular cells may be used to induce new follicle growth in cultures. Future advances in this area are aimed at creating new follicles where they no longer exist and at rejuvenating hair growth in areas of miniaturization.
