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CARF Communiqué
Cicatricial Alopecia Research Foundation May 2016 • XX
May 2016
Issue XX
www.CARFintl.org
In this issue:
Support Group News
San Francisco................... 3
Los Angeles....................... 4
Twin Cities......................... 4
Patient Corner.................. 5-7
Meetings, Advocacy &
Awareness...................... 8-10
Clinical Trials & Research
Studies—Recruiting
Patients..............................11
Research Findings............ 12
Support Group List............ 15
It’s not too late
to register and
join us!
7th International
Patient-Doctor
Conference
June 3-5, 2016
New Orleans, LA, USA
CARF Communiqué
Platelet Rich Plasma (PRP) Not Successful for
Cicatricial Alopecia
By Nicole Rogers, MD
Platelets are essential blood cells in the human body. Their normal function is to stop bleeding when they bind together and form clots. However, they are also known to secrete growth factors, including fibroblast growth factor (FGF), vascular endothelial growth factor (VEGF), platelet derived growth factor (PDGF), and transforming growth factor. There
is evidence that when these growth factors are injected into areas of hair thinning that they may increase hair thickness
and improve hair caliber. One pilot study investigating PRP for male and female pattern hair loss demonstrated clinically
important differences in 40% and 54.7% of patients, according to the two evaluators, respectively.1
Two patients were recently treated in our office with platelet rich plasma to see if the PRP might be effective in either
stopping inflammation or regrowing the hair. Both patients were female: one patient had Frontal Fibrosing Alopecia (FFA) and the other had Lichen Planopilaris
(LPP) affecting the top of the scalp. Their blood was drawn and spun down using a Healeon Medical PRP System centrifuge to achieve a platelet concentration
5-8× higher than normal. Approximately 6cc of PRP were obtained per patient
per session, and then was injected into the affected areas of hair loss. Both patients tolerated the procedures well. They underwent three sessions approximately
8 weeks apart. Baseline and final photos were taken 8 weeks after the third session
(6 months after the first round of injections).
At the final 6-month examination, there did not appear to be any decrease in
the amount of erythema (redness) around the follicles. Likewise, no new hair regrowth was seen in the areas of Cicatricial Alopecia. The process of PRP remains
interesting but its role will most likely remain limited to the treatment of nonscarring alopecias, where medical therapy has already been maximized and/or patients are not candidates for hair transplant surgery. Even so, the treatment of these
conditions with PRP can be quite variable in its results. As a medical therapy, PRP
is still better established in fields like dentistry and orthopedics as a means to promote wound healing.
Reference
1. Schiavone, G., et al. Platelet-rich plasma for androgenetic alopecia: Pilot study. Derm Surg. 2014; 40:1010-1019.
CARF Needs You!
We are here FOR YOU and BECAUSE of YOU. We can do so much for cicatricial alopecia patients around the world because
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Please consider making a donation to CARF so we can continue to advance our mission. Every gift matters, especially yours,
as we work every day to provide patients emotional support and educational opportunities, raise public awareness and advance
and promote research of the cicatricial alopecias.
It’s easy to make a tax deductible donation: http://www.carfintl.org/donations.php.
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Thank you for your support. Together, we're able to do so much more!
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On fire for research and a cure!
CARF Communiqué
CARF COMMUNIQUÉ
EDITORIAL TEAM
Physician Editor: Adriana Schmidt, MD
Managing Editor: Cheryl Duckler
Contributing Editor: Victoria Ceh, MPA
May 2016 • XX
CARF Physician Referral List—
Online for CARF Subscribers
Includes physicians who treat hair loss and are accepting new patients. Available to CARF Subscribers.
BOARD OF DIRECTORS
Rita Wanser, Chairman
Andrew Alexis, MD, MPH
Christina Arungwa, MBA
Wilma F. Bergfeld, MD, FACP
Corey Hartman, MD
Maria K. Hordinsky, MD
Christine Janus
Yolanda Lenzy, MD, MPH
Jim O’Connell
Sharon Potter
Nicole E. Rogers, MD
Jerry Shapiro, MD FRCPC
Ken Washenik, MD, PhD
SCIENTIFIC ADVISORS
John P. Sundberg, DVM, PhD, Chairman
The Jackson Laboratory
CARF Subscriber Database
Subscribers may log in and access all past issues of the Communiqué newsletter, make donations, sign
up for CARF Support Groups, and more! You may log in by visiting the CARF website, clicking on “Join
CARF,” and then logging into the “Subscriber Area.”
Would you like to be a part of the newsletter?
Please consider sharing your experience with cicatricial alopecia and/or attending a support group. Send your
write-up to [email protected].
Victoria H. Barbosa, MD, MPH, MBA
Rush University Medical Center
Valerie D. Callender, MD
Howard University
Lynne J. Goldberg, MD
Boston University
Lloyd E. King, Jr, MD, PhD
Vanderbilt University
Amy McMichael, MD
Wake Forest University
Paradi Mirmirani, MD
University of California, San Francisco
Elise A. Olsen, MD
Duke University
Cicatricial Alopecia Research Foundation
303 West State Street
Geneva, IL 60134 USA
Tel: 1-310-801-3450 • Fax: 1-630-262-1520
[email protected]
Apostolos Pappas, PhD
Johnson & Johnson (Lipid Biology Team Leader)
Ralf Paus, MD
University of Luebeck, Germany
University of Manchester, UK
Vera H. Price, MD, FRCPC, Founder
University of California, San Francisco
Michael D. Rosenblum, MD, PhD
University of California, San Francisco
Jerry Shapiro, MD FRCPC
University of British Columbia
Mission Statement:
To provide education and patient support, raise public awareness, and
advance and promote research.
Vision:
To improve the care of patients with inflammatory, scarring hair disorders.
Leonard C. Sperling, MD
Uniformed Services University
STAFF
Victoria Ceh, MPA
Executive Director, [email protected]
Melanie Stancampiano
Associate Executive Director,
[email protected]
Kimberly Miller
HQ & Administrative Manager,
[email protected]
Sue Reed & Katie Masini
Administrative Assistants, [email protected]
On fire for research and a cure!
The Communiqué is published bi-annually by the Cicatricial Alopecia Research Foundation. Copyright ©2016 by the Cicatricial Alopecia Research Foundation,
303 West State Street, Geneva, IL 60134, USA. The views expressed herein are those of the individual author and are not necessarily those of the Cicatricial
Alopecia Research Foundation (CARF), its officers, directors, or staff. Its contents are solely the opinions of the authors and are not formally “peer reviewed”
before publication. Information included herein is not medical advice and is not intended to replace the considered judgment of a practitioner with respect
to particular patients, procedures, or practices. CARF makes no warranty, guarantee, or other representation, express or implied, with respect to the accuracy
or sufficiency of any information provided. To the extent permissible under applicable laws, CARF specifically disclaims responsibility for any injury and/or
damage to persons or property as a result of an author’s statements or materials or the use or operation of any ideas, instructions, procedures, products, methods
or dosages contained herein.
2www.CARFIntl.org
CARF Communiqué
May 2016 • XX
SUPPORT GROUP NEWS
Report from San Francisco
By Marilyn Ey (Support Group Leader)
There is not a lot of teaching regarding hair problems in medical school. Cicatricial Alopecia (CICAL) doesn’t get very much discussion. Many
doctors still aren’t properly diagnosing CICAL. Some labs still don’t get it right.
Here are a few pointers to keep in mind before going to your dermatology appointment:
1. Wet hair prevents an accurate “pull test” reading. Shampoo your hair at least 24 hours before your appointment. For consistency, always
shampoo at the same time (one, two, or three days) in advance.
2. Be your own best CICAL detective between office visits. Provide accurate written information to your doctor.
3. Copy CARF newsletter articles you find interesting and share them with your doctor.
Some general notes on CICAL to keep in mind:
• In CICAL, no one goes bald. An impressive amount of hair may be lost, but not all hair.
• CICAL generally is not a familial thing.
• Shampoo as much or as little as you’re comfortable. Shampoos with additives can be irritating to inflamed follicles. Use warm (NOT hot)
water to shampoo. End with cool or cold water.
• An informative book available through Amazon, “Cicatricial Alopecia, An Approach to Diagnosis and Management,” was authored by Drs.
Vera Price and Paradi Mirmirani. The UCSF Department of Dermatology Hair Disorder Clinic is held the 2nd and 4th Friday of each
month.
• When applying more than one topical, make sure your scalp is dry. Always apply minoxodil (generic for Rogaine®) BEFORE other topicals.
Rub the scalp to ensure proper distribution. Gloves may also be used when applying minoxodi. If not, thoroughly wash your hands.
• Frontal Fibrosing Alopecia (FFA) is the only CICAL with eyebrow hair loss. Use a Q-tip to apply a topical to eyebrows. Eyebrow injections
can help, but are tricky. Injections should be done by an experienced dermatologist.
• Finasteride usage has increased. It has few side effects.
Following are a few CICAL suggestions:
1. Cold reduces inflammation. Heat is bad. COLD is GOOD.
2. Place a frozen bag of peas on your scalp to reduce inflammation and itching.
3. Sweat irritates inflammation in hair follicles. Rather than using Salicylic Acid one man removes sweat from his scalp using tissues dipped in
cheap vodka, which he carries in Ziploc bags.
4. To reduce sweating, wear cooling cloths or a cooling hat. (You can order online, purchase at Dick’s Sporting Goods, or find available seasonally at Costco, Lowes, and Home Depot.)
5. When swimming, wear a comfortable nammu cap. (Available at www.amazon.com or www.nammuhats.com.)
Some personal expressions were noted:
• I got a new hair and I was so excited.
• All my life, I played sports and used to shave my head. So losing hair is not a big deal.
• I have hair on my face, so I shave it.
• Don’t let CICAL bring you down. Change your attitude.
• I’m growing my hair long, so my Grandma can use it for a wig.
• If you have CICAL, what is the best thing to wear? A smile.
www.CARFIntl.org3
CARF Communiqué
May 2016 • XX
SUPPORT GROUP NEWS
Report from Los Angeles
By Adriana Schmidt, MD (Support Group Leader)
“Accessorize your life” with a hairpiece!
At our April 3 meeting, we were happy to host Denise Roussouw from Top Secret Haircessory. Denise got
involved in the hair business 16 years ago while working in Hollywood; a lot of actresses wear hairpieces, extensions, and even wigs. Denise wants every woman to look and feel her best, and she strongly believes that what
she is making and selling is self-esteem.
Denise’s client asked whether she could come to our meeting to tell us how much having good hairpieces
has changed her life for the better. She uses these pieces as a way to make herself feel sexier, stronger, and more
beautiful every day. She and Denise demonstrated multiple types of hairpieces—crown and bangs, extension
clips, savauges, and mini savauges—that gently clip into the hair without causing the tugging that can be damaging to already existing hair.
Many of us tried the Haircessories and got feedback from the group about how great we looked with more
hair! A few of our ladies said that the demonstration encouraged them to want to make an appointment at
Denise’s privacy-focused shop to try on hairpieces for the first time. Denise is also working on making eyebrow
pieces from human hair.
After having worked in the business of making women feel more confident about their hair, Denise’s take-home
message for us was that women should see hairpieces as accessories and not as wigs. The artistry of this industry
has advanced tremendously over the past 15 years. There are now many great options that blend or subtly cover
existing hair. Think of hairpieces as something akin to a piece of jewelry, but more valuable to your self-esteem!
Report from the Twin Cities
By Erin Dodd and Max Disse, Medical Students
The inaugural meeting of the Twin Cities support group was held on December 5, 2015, at the University of Minnesota Department of Dermatology. Corinna Turner, the current support group leader, was the driving force behind this meeting. Like many others with Cicatricial Alopecia (CICAL),
she did not personally know of anyone else affected by the disease. She was passionate about starting a group where people could meet and share their
similar experiences.
Although we knew many people had expressed interest in attending the meeting, we worried that attendance might be lacking. It was, after all, a
chilly December morning in Minnesota. Thankfully, our worries were unfounded, and we ended up having a great turnout.
Dr. Maria Hordinsky, a world-renowned expert in hair diseases, opened the meeting with introductions and a presentation on the various types
of CICALs and the currently available treatments. Dr. Hordinsky also showed images of the hair follicle and explained how biopsies are used to help
diagnose these conditions.
Next, we discussed current research studies for CICAL available at the University of Minnesota. Max spoke about the Frontal Fibrosing Alopecia
(FFA) study that is being coordinated by Duke University. He talked about the survey and how it is being used to help elucidate the cause of this disease
and hopefully guide future studies. Erin talked about a study using topical gabapentin to treat scalp symptoms such as itching and burning in patients
with CICAL. We also discussed future studies that are currently in development. We closed our portion of the meeting with a Q&A session. Everyone
had very insightful questions and it was interesting to hear about personal experiences with CICAL.
We were honored to have Dr. Jan Ricar (dermatologist and Fulbright Scholar
from the Czech Republic) and Dr. Azar Maluki (dermatologist from Iraq) join us at
the meeting. They were able to comment on their experiences with CICALs in their
respective countries.
The meeting ended with a breakout session for patients to get to know each other
and discuss the future of the group. Overall, this was a very successful first meeting and
the group was enthusiastic about future meetings. We are so excited about this group
and believe it will be a wonderful resource for people to share their experiences and learn
more about CICAL. Future meetings will be held every 2-3 months at the Roseville Library in Roseville, Minnesota. In addition, Dr. Hordinsky and her colleagues will hold
an annual meeting to discuss the latest research and clinical updates in CICAL.
For more information about the support group, please contact Corinna at
[email protected]. For questions about clinical research studies
at the University of Minnesota, contact [email protected].
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CARF Communiqué
May 2016 • XX
PATIENT CORNER
Me and Minoxidil: Fear, Expectations, and Reality
By Sistah D.
By my mid-40s, my hair was noticeably thinner. I went from compulsively pulling my ever-receding bangs forward while I cursed my genes…to
my world falling apart in 2014. I was diagnosed with Frontal Fibrosing Alopecia (FFA) and Lichen Planopilaris (LPP) plus the suspected Androgenetic
Alopecia.
To get beyond grief and my fear of severe hair loss, I decided to get a custom-made hairpiece so I could gracefully embrace my new “self.” My dermatologist said I didn’t need the camouflage now, but since there’s no certainty with CICAL, I ordered the piece anyway as it would take 4 months to make.
In addition to the usual treatments to decrease inflammation, I started using minoxidil 5% foam on the entire top of my head and eyebrows twice
daily. It’s said to slow or stop hair loss and promote growth and thickness in some people (but not in areas that are scarred). Results vary. I was hopeful
but didn’t expect much.
Three weeks later, I had an increase in hair shedding. Sadly, it got to a point where I wouldn’t go out without a headband or hat. Shedding is actually
part of minoxidil’s magic. (When the follicles are stimulated, old hair has to shed to let new thicker, healthier hair emerge.) I could hardly wait for that
topper to arrive as I didn’t know if minoxidil was working its magic on me or if the loss was from CICAL.
Finasteride was added to my treatment plan. I also got steroid injections for my faint eyebrows.
Six months passed. I was learning to accept my new hairpieced, headbanded FFA, LLP, alopecia self. My hairdresser noticed new hair sprouting. I
was skeptical.
One year later. I began experiencing denser hair growth throughout the top of head and hairline where it wasn’t scarred.
Two years later. I’ll always be scarred and am still slowly losing hair from CICAL, but the rest of my hair has filled in beyond my expectations.
It takes dedication, patience and acceptance. Growth is uncertain. It’s time consuming, somewhat costly, and the results are slow to realize. On the
up side, it does give you the opportunity to be in tune with the health of your scalp. Plus, side-effects are uncommon and usually minimal. If you are
a candidate, the growth can be well worth it. Ask your doctor first if you are considering trying it.
June 2014: My doctor asked gently, “When is that hairpiece coming?”
June 2014
November 2015: My doctor said the new growth might make
up for the scarred loss.
February 2016: My doctor thought I was wearing my hairpiece but it was my new real reality.
Results. 1 year later: Kenalog (steroid) injections every 8-12 weeks plus Minoxidil Foam
2× a day.
www.CARFIntl.org5
CARF Communiqué
May 2016 • XX
PATIENT CORNER
Tongue Twisters
By Marilyn Ey
Cicatricial = sick ah trish ul (the abbreviation for cicatricial alopecia is CICAL)
Lymphocytic = limp foe sit ick
Neutrophylic = new tro fill ick
Lichen Planopilaris = Like un Plane oh pill are us
Folliculitis Decalvans = Foe lick you light us Dee cal vans (Isn’t “FD” much easier to say?)
Doxycycline = docks ee sigh clean
Finasteride = fin as ter eyed (generic for Propecia or Proscar)
Gabapentin = gab ah pen tin
Hydroxychloroquine = hi drox ee clor oh kwin (generic for Plaquenil)
Plaquenil = plaque when ill
Mycophenolate = my co fen ah late (generic for CellCept)
Pioglitazone = pie oh glit ah zone (generic for Actos)
Actos = ack toes
Salicylic Acid = Sal ah sill ick Acid
Tacrolimus = tack row lime us
Applying a Hairpiece
By Marilyn Ey
Prep Area
1. Pull hair back (use hair band or hair clips).
2. Rub alcohol on tape area or exfoliate.
3. Allow skin to dry.
Prep Piece
1. Trim several double-sided tapes to fit piece. Make tape a little smaller than the piece itself.
2. Remove one side of double-sided tape protective covering and apply it to the piece. If using a smaller “slice of hair,” use several tapes to secure the
ends and middle.
(Double-sided tape: One lady reports her tapes last 2 weeks. Another uses Davlyn double-sided blue tape from www. Hairdirect.com to keep her pieces
in for a month. Length of adherence depends on skin type and lifestyle.)
Applying the Piece
1. Remove the middle double-sided tape protective covering.
2. Position piece above alcohol-cleaned area. Adjust position for a balanced look.
3. Place piece next to hairline and press to secure. (Warning: Do NOT place on hair. Ouch!)
4. Remove tape covering from one end and follow above application instructions. Repeat with tape on the other end.
Styling the Piece
1. Remove headband or hair clips.
2. Gently blend hair with piece.
3. If necessary use hairspray.
Removing the Piece
1. Dip a Q-tip in alcohol.
2. Gently press Q-tip along one tape edge until tape releases.
3. Carefully remove the tape to prevent it sticking to hair. If it does, alcohol will release tape from hair.
4. Repeat above instructions for each tape.
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CARF Communiqué
May 2016 • XX
PATIENT CORNER
Cicatricial Sisters Share
The following is from the hearts of six Cicatrical Alopecia (CICAL) ladies. Originally they called themselves “Cicatricial Sisters,” changed it to “Sistatricals”
(sisters with cicatricial) and now “Sistas.”
Wyoming Sista
The unpredictability of CICAL gives me the tools to deal with the other inevitable unexpected challenges in life.
Sista ME’s Support to a Sista
So sorry about your RX medical mystery tour. CICAL’s frustration further exacerbates your condition. So my orders are…feet up, good book, glass
of wine, snuggle with a loved one while watching a gorgeous sunset. Relax and enjoy life. Reduce that inner stress and quit trying to “control” CICAL.
What I've observed is CICAL seems to calm down when the person is calm internally. Sista, you’ve had so many recent frustrations that your CICAL
circle continues. Worrying about every single hair lost just adds to the cycle. I wish you could get inside my head and feel what it is to not care about
hair loss any more. It is what it is. I can’t control it so I just let my follicles go…“let it go”—both figuratively and physically.
At a support meeting I’ve shared two positives CICAL brought to my life. The first positive is friendship. Many CICALs and doctors are now my
friends. Of course, my sistas are oh so very SPECIAL. You ladies are a gift. The second positive is realizing the importance of stress reduction. Stress
happens. CICAL flare-ups forced me to handle stress. I should have learned those techniques decades ago. My life would have been much more positive and enjoyable.
Sista, think about the past year. Analyze your stress level month by month. When was stress the worst? Do you see a pattern with flare-ups? How
much of your stress issues can you change? Change ‘em. How many do you just have to accept? Accept ‘em. Remember…God grant me the serenity
to accept the things I cannot change; courage to accept the things I can; and wisdom to know the difference.
Sis, you have helped me get through my tough times. Thank you. I am so very lucky you are in my life. You are one SPECIAL woman. I'm blessed
having you and my supportive sistas in my life.
www.CARFIntl.org7
CARF Communiqué
May 2016 • XX
MEETINGS, ADVOCACY & AWARENESS
Update from National and International Conferences
By Rita Wanser, CARF Chairman of the Board
In our last Communiqué, we promised an update on CARF’s participation in the 9th World Congress for Hair Research, which took place November
18-21, 2015, in Miami, Florida. The Congress was hosted by the North American Hair Research Society, with our very own board members, Drs. Wilma
Bergfeld and Maria Hordinsky, as two of the several key organizers of this important meeting for hair researchers, clinicians, patient advocacy groups, and
industry representatives. The attendees came from across the globe to listen and learn. The topic of cicatricial alopecia had its own session with Director
Dr. Elise A. Olsen (USA and a current CARF Scientific Advisor) and Co-Director Dr. Andrew G. Messenger (U.K.) leading the session. Invited speakers
included Dr. Nonhlanhla P. Khumalo (South Africa) speaking on identifying preventable causes of scarring alopecia, and Dr. Olsen providing a preliminary update on the multicenter study on FFA. Oral abstract presentations were also given by Dr. Nikki Tang (USA) on comparing regimens for the treatment of Central Centrifugal Cicatricial Alopecia (CCCA), Dr. Curtis Thompson (USA) on his research of the absence of catagen/telogen phase and loss
of cytokeratin 15 expression in hair follicles in LPP, and Dr. Varvara Kanti (Germany) on a report of epidemiological data from a patient registry on FFA.
The format of the World Congress provided also for small format discussion sessions. Several table topics were designated for CICAL that facilitated the ability of clinicians and investigators from different labs to “compare notes” and form future collaborations. CARF also had a small exhibit,
which enabled Victoria Ceh (CARF Executive Director) and me to reach out to interested physicians and researchers with educational materials on the
cicatricial alopecias and CARF awareness information. There was a high interest in the patient conference information that physicians were looking to
share with their patients. We hope the patients decide to come and be part of the Patient Conference in June.
e
The Annual Meeting of the American Academy of Dermatology was held in Washington, DC, March 4-8, 2016. There were multiple sessions on
hair loss. CICAL was discussed in at least 7 sessions on general hair loss and in 6 targeted sessions. The increase in both general and targeted sessions
means there is a greater awareness of the cicatricial alopecias and the reach of education for proper diagnosis and treatment options is growing! This is
not only key for dermatologists but a huge win for patients.
The five sessions included:
1. Lichen Planus and Lichen Planopilaris: An Update
Director: Lidia Rudnicka, MD, PhD
The physician speakers at this session included Nasim Fazel, Ginat W. Mirowski, Jerry Shapiro (a current member of the CARF BOD),
Rochelle R. Torgerson, and Antonella Tosti. The overall objective of this session was to enable clinicians to diagnose lichen planus more
effectively and help select the best treatment for the patient with oral, cutaneous, or hair loss related lichen planus.
2. Management of Scarring Hair Loss
Director: Lynne J. Goldberg, MD (a CARF Scientific Advisor)
Speakers at this session included Valerie D. Callender (a CARF Scientific Advisor) and Nicole Rogers (a current member of the CARF
Board of Directors). The overall objectives of the session was to help clinicians differentiate between the types of scarring alopecia and
formulate individualized treatment plans for patients with scarring alopecia and note that the same approach will not work for every patient.
3. Nerves, the Symptomatic Scalp, and Scarring Hair Diseases: A New Approach to Addressing Pain, Itch, and Burning
Director: Maria K. Hordinsky, MD (a current member of the CARF Board of Directors)
Dr. Hordinsky was joined by Dr. Isabella I. Doche. Their discussion was on how to identify nerve and neuropeptide abnormalities in Lichen
Planopilaris (LPP) and Frontal Fibrosing Flopecia (FFA). The discussion also provided information to help determine when it may be best
to prescribe topical, intralesional, or oral treatments or combination therapy.
4. Practical Management of Hair Loss in Women of African Descent
Director: Llorenia Muir-Green, MBBS, MSc
The learning objective of this session was to describe the structural and functional differences of the hair types of the main ethnic groups,
with an emphasis on the unique properties of the African hair type. Dr. Muir-Green also helped to identify the range of strategies employed
by persons of African descent to care and style their hair and to describe how these styling practices may adversely affect the hair, skin, and
scalp. She also discussed treatment strategies for the hair disorders that uniquely present in this group.
5. Updates in the Epidemic of Hair Loss in African American Women
Director: Yolanda M. Lenzy, MD (a current member of the CARF Board of Directors)
Speakers at Dr. Lenzy’s session included Victoria Holloway Barbosa, MD, MBA, MPH (CARF Scientific Advisor), Chesahna Kindred, MD,
MBA, Kimberly Salkey, MD, and Meena Kuimari Singh, MD. The learning objectives of this course were to enable attendees to describe
continued on page 9
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CARF Communiqué
May 2016 • XX
MEETINGS, ADVOCACY & AWARENESS
the results of a large nationwide cohort of African American women examining the prevalence and risk factors for CCCA and traction
alopecia, discuss data on the genetic link in CCCA, analyze the state of the science including the latest treatments, and explore future
directions in CCCA research.
6. Updates in Hair Disorders
Director: Paradi Mirmirani, MD (CARF Scientific Advisor)
Speakers at Dr. Mirmirani’s session included Jennifer Fu, MD, Justin Ko, MD, MBA, Ingrid Roseborough, MD, Leonard C. Sperling, MD
(CARF Scientific Advisor), Antonella Tosti, MD, and Ken Washenik, MD, PhD (CARF Board of Directors). The learning objectives of this
session were to enable attendees to use up-to-date, evidence-based information to assess, treat, and counsel patients with hair disorders, and
to discuss basic follicular biology and pathophysiology of common hair disorders.
Also, while at AAD, several Board members and Scientific Advisors attended the North American Hair Research Society (NAHRS) Scientific
Meeting. Dr. George Cotsarelis gave a recap of several key research presentations from the World Congress for Hair Research. Of particular interest to
CARF is the early research being done by Dr. Jerry Lin. He found embryonic factors that induce hair follicle regeneration. This was done by isolating
proteins from mouse skin that induce hair follicle regeneration in a hair reconstitution assay. This early research will be a topic of discussion with our
Scientific Advisors.
Additionally, the NAHRS generously gives NAAF and CARF time on the podium to update the audience on our progress and upcoming events. We are always grateful to have an attentive audience, and I
took advantage to discuss our new brochures, website update, Patient-Doctor Conference, and upcoming scientific symposium in May at the Society of Investigative Dermatology (SID) Annual Meeting.
In the last newsletter, I updated you on our activities with the Coalition of Skin Diseases (CSD).
This year, CARF Board member Christine Janus represented CARF at the CSD meeting, which is held
annually during the AAD Annual Meeting. One important topic at the meeting was the continuation
of the efforts of the CSD and the AAD. CARF “won” a spot to represent patient advocacy groups on
the AAD Patient Advocacy Task Force. This active group meets regularly to brainstorm on efforts for
creating awareness of our patient groups to dermatologists and advance our education efforts. We will
be naming our physician representative in the coming weeks.
Specific to CARF, we held our annual open meeting, inviting not only Board members and Scientific
Advisors, but also physicians interested in cicatricial alopecia and our efforts. During this meeting, we
updated our progress against several working groups that will create more awareness to professionals
as well as help patients have access to knowledgeable individuals and information. One group is the
Cosmetology Industry Work Group, chaired by Dr. Kim Salkey. She will be working with two board
liaisons, Christina Arungwa and Dr. Yolanda Lenzy, and other several other interested dermatologists
and volunteers. Their goal is to roll out in five states an official education program to cosmetologists Drs. George Cotsarelis (keynote), Wilma Bergfeld (NAHRS
regarding hair loss conditions within one year of initiation. Specifics of their plans and rollout will be President), Maria Hordinsky (NAHRS Secretary-Treasurer),
and Desmond Tobin (keynote) at the NAHRS Scientific
available in future Communiqués.
Meeting, March 4, 2016.
Dr. Paradi Mirmirani and Board liaisons Dr. Corey Hartman and Christine Janus will be working
to optimize our website and other technologies. Of interest to this team is investigating virtual support
group meetings for those who cannot attend in person. They also will review and make additional comments to maximize the information on our website and provide a much needed way to communicate
information on the ongoing research and clinical trials to better understand cicatricial alopecia.
In addition, we discussed several important and upcoming meetings for CARF patients, educators,
and physicians. These meetings include a Cicatricial Alopecia Research Symposium & Roundtable at
the 2016 Society for Investigative Dermatology Annual Meeting, taking place May 11-14, 2016, in
Scottsdale, Arizona. The CARF Scientific Advisors, under Chairman Dr. John Sundberg, have planned
the Symposium to include invited presentations (e.g., what is known about the disease, what are the
theories about what is causing the disease, etc.) followed by a closed roundtable discussion session of the
CARF Scientific Advisors to chart the course of directed research for the coming year(s).
And, finally, of course, is the CARF 7th International Patient-Doctor Conference taking place June
3-5, 2016, in New Orleans, Louisiana. Program Chair Dr. Nicole E. Rogers (USA) is organizing a topnotch program! I do hope to see you there. I invite you to connect with me at the conference. I appreciate meeting you and learning about your condition, as well as understanding how CARF can help you.
I thank all of our volunteer Board members and Scientific Advisors who put so much time into
preparing for and attending these meetings, Victoria Ceh (CARF Executive Director) and Melanie
Stancampiano (CARF Associate Executive Director) for their part in organizing and attending, and all Dr. Nicole Rogers and Victoria Ceh, CARF Executive Director,
at the CARF Open Meeting, March 5, 2016.
other volunteers who make these meetings and events so helpful.
www.CARFIntl.org9
CARF Communiqué
May 2016 • XX
MEETINGS, ADVOCACY & AWARENESS
Get Jazzed for the next CARF Patient-Doctor Conference!
It’s not too late
to register!
Consider attending
this life-changing
conference.
7th International Patient-Doctor
Conference
Hampton Inn & Suites New Orleans Convention Center
New Orleans, LA, USA
Friday-Sunday, June 3-5, 2016
Host: Dr. Nicole Rogers
The Cicatricial Alopecia Research Foundation (CARF) together with Dr. Nicole Rogers and the CARF South
Louisiana Patient Support Group invite you and your family to attend a two-day educational conference. Learn more
about the latest in research and treatment options, and network with other patients, loved ones, and physicians.
This CARF biennial conference is a must for patients and physicians involved with cicatricial alopecia. Attendees
attest to a life-changing experience after participating in a variety of lectures, discussions, support groups, and more.
Why patients, families, friends, physicians, and nurses should attend:
•
Learn more about the diagnosis and available treatments.
•
Discover the latest research breakthroughs for cicatricial alopecia.
•
Hear about cosmetic solutions.
•
Meet leading physicians and researchers in an informal setting.
•
Participate in small group discussions, meet new friends and get support.
•
Explore the history and culture of New Orleans.
Enjoy all of these important benefits with the soul of New Orleans as the backdrop. Be sure to take time to explore the wide variety of attractions this beautiful city has to offer.
Hampton Inn & Suites
New Orleans Convention Center
For more information including the full program agenda and to register, please visit:
http://www.carfintl.org/patient-doctor-conference.php
What is a CARF Patient-Doctor Conference?
A CARF Patient-Doctor Conference is a place for patients and doctors to come together in a safe and supportive environment. It’s a
place where you can learn about cicatricial alopecia and the latest medical research in finding a cure, a place where you can meet others
with cicatricial alopecia and share your stories, a place where you can discover products and lifestyle changes to better manage your
dis¬ease, a place where you will become empowered and given hope, and a place where you can be yourself. Our patient conferences
have changed people’s lives and we hope they can change yours as well.
10www.CARFIntl.org
CARF Communiqué
May 2016 • XX
CLINICAL TRIALS & RESEARCH STUDIES—
RECRUITING PATIENTS
Recruiting Patients for U.S. Frontal Fibrosing Alopecia Study
Frontal Fibrosing Alopecia (FFA) is a type of scarring or permanent hair loss that was first described in 1994. It typically occurs in post-menopausal
women of European descent but has been reported in men, premenopausal women, and other races and ethnicities. It typically involves recession of the
frontal hairline, redness of the involved scalp, and eyebrow loss. There is no known cause and no established treatment.
A multicenter, data collection research study is now going on at 9 different sites across the United States. If you or your dermatologist feels that you
may have this condition, please either contact one of the sites directly or ask your dermatologist to contact the site on your behalf. The study doctors
first request that you be seen in their clinics for a routine visit for hair loss, and then if your diagnosis is confirmed to be FFA, you would be consented to
participate in the study. The study would allow the study doctors to collect further information on your hair loss condition and for you to fill out an online questionnaire that may help to lead to information about what is causing this disorder. There is no treatment or compensation related to the study.
If you are interested in participating in this study, please contact or have your dermatologist contact one of the following sites closest to your home.
The sites will set up an appointment for you to see the study doctor.
Callender Center for Clinical Research
Glenn Dale, Maryland
Investigator: Valerie Callender, MD
Contact: [email protected] or 301-352-1520
Northwest Dermatology and Research Center
Portland, Oregon
Investigator: Janet Roberts, MD
Contact: 503-223-1933
University of Pennsylvania
Philadelphia, Pennsylvania
Investigator: George Cotsarelis, MD
Contact: 215-662-2737
Cleveland Clinic
Cleveland, Ohio
Investigator: Wilma Bergfeld, MD
Contact: 216-444-5722 or 216-445-9110
University of Miami
Miami, Florida
Investigator: Antonella Tosti, MD
Contact: [email protected]
Wake Forest University
Winston-Salem, North Carolina
Investigator: Amy McMichael, MD
Contact: [email protected]
The (Kaiser) Permanente Group
Vallejo, California
Investigator: Paradi Mirmirani, MD
Contact: 707-651-2552
University of Minnesota
Minneapolis, Minnesota
Investigator: Maria Hordinsky, MD
Contact: 612-624-5721
Frontal Fibrosing Alopecia Study – UK Participants
Dr. Christos Tziotzios, an academic specialist registrar in Dermatology, is working with John McGrath, Professor of Molecular Dermatology, Michael Simpson, Professor of Genomic Medicine, and Dr. David Fenton, Consultant Dermatologist and Expert in Hair Disorders, at St. John's Institute
of Dermatology in London on genetic aspects of frontal fibrosing alopecia (FFA).
The team of researchers are collecting DNA samples from individuals affected by FFA and would be delighted to see you in their Research Clinic,
which takes place at Guy’s Hospital in London. A number of clinicians in other UK cities and towns are registered collaborators and it may be possible
for you to be seen locally. The research appointment involves taking a blood sample for extracting your genetic material (DNA) and a focused clinical
history, and it lasts 20-30 minutes on average. The research study is supported by a Fellowship award to Dr. Tziotzios by the National Institute for
Health Research (NIHR), has been ethically approved, and adheres to Good Clinical Practice guidelines. The aim is to understand the genetic basis
of this distressing condition with the hope to better direct future treatments. To participate in the research or for any questions or clarification, please
email [email protected].
Topical Gabapentin Study
Do you have pain, burning, or itching associated with scarring alopecia?
The Department of Dermatology at the University of Minnesota, Twin Cities, is currently recruiting participants for a clinical trial to assess the
efficacy of a topical Gabapentin 6% solution at treating the discomfort associated with scarring alopecia. Study entails applying a topical solution to
the affected scalp twice daily over the course of 12 weeks. Biopsies and blood work will be used to assess effectiveness along with questionnaires and
photographs. You will be compensated $25 for each skin biopsy that is taken, and the study drug will be provided to you free of charge.
If you are over the age of 18 and interested in participating, please contact the Dermatology Department at [email protected] or 1-612-624-5721
for further information.
www.CARFIntl.org11
CARF Communiqué
May 2016 • XX
RESEARCH FINDINGS
Cutting Edge Research Presented on Promising New Hair Loss Treatments
GENEVA, IL (PRWEB) DECEMBER 04, 2015
The North American Hair Research Society hosted more than 700 scientists and physicians from 53 countries at the 9th World Congress for Hair
Research in Miami, Florida, which took place Nov. 18-21, 2015. At the Congress, their latest findings on hair follicle research was shared.
Examples of exciting, new research included: 1) the role of the prostaglandins that promote or inhibit hair growth, 2) the regeneration of hair follicles from stem cells and the possibility to create new follicles (follicular neogenesis), 3) the new treatments for alopecia areata, the most common form
of autoimmune hair loss, 4) the effects of laser light energy on hair growth, and 5) the new treatment approaches for androgenetic alopecia (male and
female pattern hair loss) aimed at changing the local follicular environment, reducing follicular stress, and enhancing local production of growth factors—all of which can influence hair growth.
Several promising hair loss treatments are in clinical trials, which means that they may soon be available to the public, including treatments that
would work topically or systemically.
Why the hair follicle?
There is growing research interest in the hair follicle as a model system for research due to its ease of access for study and the ability to perform
research using a wide variety of model systems, including sophisticated imaging techniques to watch hair follicle growth in real time. The hair follicle
is one of the three most proliferative organs, the others being bone marrow and gastrointestinal (GI) tract. With greater understanding of hair cycling,
cells outside the follicle that influence the cycle, auxiliary cells, inflammation, and other factors, major cross transfers of knowledge to other organs and
diseases will be possible (e.g., autoimmune disease, asthma, and allergies).
For more information, a meeting summary will be published in the near future in the Journal of Investigative Dermatology and accessible at http://
www.hair2015.org.
12www.CARFIntl.org
CARF Communiqué
May 2016 • XX
www.CARFIntl.org13
CARF Communiqué
May 2016 • XX
CARF BENEFACTORS
Thank you to our 2015 donors!
CARF would like to give a heartfelt THANK YOU to each of the individuals and corporations below who have supported the mission of CARF
through their generous financial support.
DIAMOND BENEFACTORS $10,000+
PATRONS up to $100
International Society of Hair Restoration Surgery
Beatrice Abrams
Edward Aguilar
Kenneth Alpern
Emily Altman
Anonymous
Patricia Baldwin
Karen Bentall
Wilma F. Bergfeld, MD
David Birkes
Olivia Carrescia
Joan Chasen
Lois Clift-O'Grady
Brandy Collins
Diane Colyer
Leah Corbin
Christine Costley
Donna Coulson
Jackie & Ronald Davies
Christine Deeley-Wood
Nisha Desai MD
Debra Deserrano
Shirley Dresch
Mary Duran
Laurie Ellison
Sandra Enders
Carmel Engel
Debbie Falcione
William Fleharty
Mary Flodine
Rozan Gautier
Linda Globerman MD
Quenista Glover
Ellen Gross
Mary Halitzer
Eleanor Harrison Smith and Donald Ralph Smith
Charitable Fund
SILVER BENEFACTORS $2,500 to $4,999
Johnson & Johnson Family of Consumer Companies
Contributions Fund of the Community Foundation
BENEFACTOR $1,000 TO $2,499
Andrew Alexis, MD
Anonymous
Stephanie Johnson
Carl Martin
Sharon S. Potter
SPONSORS $500 to $999
Anonymous
Canfield Scientific, Inc.
Marilyn Ey
Alice Gianni Charitable Fund
Joseph Greco
Joseph Hahner
Maria K. Hordinsky, MD
Diane Moe
Sherry Trade
Shubha Tuljapurkar
Suzanne Vasgerdsian
Rita Wanser
Pamela Zupo
GRAND PATRONS $101 to $499
Anonymous
Diane Butler
Lenune Chrispin
Jospehine & Paul Currie
Iris Ellis
Turquoise Haskin
Diane Johnson
Melody Kriteman
Cynthia Mackenzie
George Mantikas
Dennis Morgan
Jim O’Connell
Soroptimist International of Chico
Mary Wilson
Peggy Harris
LaVonne Hendricks
Justin Hueston, MD
Janet Ibbotson
Doreen Karoll
Jo Kimbrough
Elayne Kuehler
Janice LeCour
Charlene Liddle
Carl Lovio
Mary Merz
Claudette Motuzas
Jill Mundy
National Alopecia Areata Foundation
Rodrigo Pirmez, MD
Andrea Poret
Patricia Rheaume
Tamra Roloff
Sharay Santora
Kathy Shearer
Carol M. Smith
Sharon Stein
Kurt Stenn, MD
Bonnie Stoker
Dina Strachan
John Sundberg, PhD
Michele Theroux
Susan Travis
Ellen Vandenburg
Jaslynn Vesuvio
Helle Voldbaek
Joan Voyles
Judith Walsh
Nancy White
Jody Zolli
14www.CARFIntl.org
CARF Communiqué
May 2016 • XX
Help Fund CARF
Amazon will donate 0.5% of the price of your eligible AmazonSmile purchases to CARF when you shop using
the following link: http://smile.amazon.com/ch/20-2049037
Thank you to those who are already participating in this program, CARF has begun receiving donations through
this program!
Member of Coalition of Skin Disorders
(http://www.coalitionofskindiseases.org/)
Member of National Organization of Rare Diseases
(http://www.rarediseases.org/)
CARF Support Groups
See www.carfintl.org for meeting dates in your area. Note: In some locations, we are looking for patient co-leaders and physician advisors.
USA Support Groups
CALIFORNIA
Los Angeles: For more information, contact Susan at
[email protected]
San Francisco: For more information, contact Marilyn at
[email protected]
ILLINOIS
Chicago: For more information, contact Joe and Bev at
[email protected]
LOUISIANA
New Orleans/Baton Rouge: For more information, contact Debbie and
Elayne at [email protected]
MARYLAND, WASHINGTON DC, VIRGINIA
For more information, contact Beth at
[email protected]
MASSACHUSETTS
Boston: For more information, contact Melody, Doreen, and Joyce at
[email protected]
MICHIGAN
Detroit: Contact Virdell at [email protected]
MINNESOTA
Minneapolis/St. Paul, for more information contact Corinna at
minneapolissuportgroup@carfintlorg
NEW YORK
New York City Area: For more information, contact
[email protected]
NORTH CAROLINA
Winton/Salem: For more information, contact Travis at
[email protected]
PENNSYLVANIA
Pittsburgh: For more information, contact Lori at
[email protected]
VIRGINIA
Hampton Roads Area: for more information contact Lucretia at
[email protected]
International Support Groups
CANADA
Toronto, Ontario: For more information, contact Shirley at
[email protected]
UK
London: For more information, contact Marva at
[email protected]
Check online for up-to-date schedule of Support Group meeting
dates and locations!
http://www.carfintl.org/support-groups.php
www.CARFIntl.org15