Hi Everyone, 

NAAF is THE place to go to get the most current information on treatment options and support groups for anyone living with Alopecia.  They are in the process of creating a national registry which can ultimately help to provide more resources and information to researchers to help in their quest for a cure.  If you or someone you know is living with Alopecia, please click on the link below & take the time to register today.   Or go to www.naaf.org to learn more.   Here at William Collier Design we create custom solutions for many clients who are living with Alopecia - please call us for a complimentary consulation or SKYPE us at: william.collier46 to learn more about how we can help.  As always, I welcome your questions and comments.  

Carrie

THE NATIONAL ALOPECIA AREATA REGISTRY

Have you ever asked, “Who gets alopecia areata?” “How did I get it when no one in my family has it?” “Is it related to another disease?” “What are the chances my children will get it?” “What is the chance that my alopecia areata will turn into alopecia areata totalis or alopecia areata universalis?”

The registry is designed to answer those types of questions. The more people who participate in the registry, the more questions we can answer and the more resources we can provide for researchers and pharmaceutical companies to advance more studies and possibly find a treatment for this disease.

If you are new to alopecia areata and just got your first patch, please register. If you have alopecia areata universalis, please register. We need everyone so we can have the most comprehensive and validated resource for scientists to use to make new discoveries about alopecia areata. This registry will be the base of any future clinical trials to develop a treatment for alopecia areata.

<<<Current Progress Report as of September 2011>>>

How was this registry created?

The National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS), one of the National Institutes of Health (NIH), has funded the National Alopecia Areata Registry since 2000, providing over six million dollars to establish it and to gather initial information and samples. Federal funding for the registry ends on March 30, 2012, and then NAAF will continue to maintain it. In helping the registry to get underway, NIAMS indicated its strong commitment to research regarding alopecia areata. The registry creates an enormous opportunity to advance basic, clinical, and translational studies in alopecia areata. It also provides an essential resource for all investigators interested in studying alopecia areata, and it stimulates opportunities for additional research support from federal and private sources.

Why is this registry important?

Have you ever asked, “Who gets alopecia areata?” “How did I get it when no one in my family has it?” “Is it related to another disease?” “What are the chances my children will get it?” “What is the chance that my alopecia areata will turn into alopecia areata totalis or alopecia areata universalis?” 
The registry is designed to answer those types of questions. The more people who participate in the registry, the more questions we can answer and the more resources we can provide for researchers and pharmaceutical companies to advance studies and possibly find a treatment for this disease. Genetic samples collected by the registry have already advanced our genetic research to new levels!

What is a Disease Registry?

A disease registry is an organized network of centers that identify and register patients with a particular disease, collect relevant research samples from the most informative families with the disease, catalogue, and store information on the patients in a central database, and make this information available to investigators interested in studying the disease.

The disease registry does not conduct the research itself, but it facilitates research by all investigators who need patient populations that are well characterized by accepted criteria, and especially patients from families with multiple members affected by the disease in question. Once established, a disease registry is a research resource that can support many diverse types of investigation and clinical trials performed by other investigators. It provides critical structure and uniformity to research, and it enables investigators to pursue promising research directions. A disease registry is like the pint of water used to prime a pump that can then deliver gallons of cool, fresh water.

How Does the National Alopecia Areata Registry Work?

The National Alopecia Areata Registry is located at five sites across the United States where patients are examined and registered, and blood and tissue samples are taken when appropriate. The samples and data are sent to Houston, Texas, where they are collected and stored by the Principal Investigator. A Steering Committee made up of key members of the Registry oversees the functions of the Registry and determines the distribution of material to appropriate investigators. NAAF’s CEO serves on this Steering Committee.

Where Can Patients Be Seen?

The sites of the registry and the senior investigators at each site are as follows:

1. University of Texas, Houston, Texas, MD Anderson Cancer Center
   Madeleine Duvic, M.D., Principal Investigator
2. University of Colorado Health Sciences Center, Denver, Colorado
   David Norris, M.D., Co-Principal Investigator
   Richard Spritz, M.D., Consultant
3. Columbia University, New York, New York
   Angela Christiano, Ph.D., Consultant
4. University of Minnesota, Minneapolis, Minnesota
   Maria Hordinsky, M.D., Consultant
5. University of California, San Francisco, California
   Vera Price, M.D., Consultant

How Does the Registry Facilitate Research in Alopecia Areata?

A well-organized and well-run registry facilitates research in alopecia areata and maximizes the effectiveness of investigation by assuring that

1. Uniform diagnostic and classification criteria are applied to patients studied.
2. Fair access to patients and tissues are provided to all credible investigators with well-conceived projects, without regard to possible scientific overlap among projects.
3. Standardized and uniform information are available on each patient. (Everything is coded so no ones identity is ever revealed.)
4. Patient studies are coordinated with studies in known animal models, which greatly enhances the effectiveness of the overall research effort in alopecia areata.

What Type of Research in Alopecia Areata is Facilitated by This Registry?

Material collected by the registry greatly facilitates studies of the genetic basis of alopecia areata, the immunologic mechanisms of alopecia areata, basic hair biology related to alopecia areata progression and response to treatment, and neurobiology and angiogenesis related to alopecia areata. Clinical trials and better understanding of disease subsets are also expected outcomes of the alopecia areata registry.

How to Participate in The Registry?

You can register online or at any of the five registry sites.

The registration process is simple. You complete a screening questionnaire called the Short Form, which provides the registry with both epidemiological and statistical information about alopecia areata. You can complete this form directly online or you can download the form, fill it out, and mail it in to the address that is right on the form.

We also encourage everyone to complete a Quality of Life questionnaire. The registry personnel know that this life-altering disease can affect your life as deeply as a life-threatening disease. They want to put together the information they gather from this questionnaire in order to approach health insurance companies for better coverage. Your name will not be listed on any of this information.

If you want to have a Short Form and Quality of Life questionnaire mailed to you, please call the Clinical Coordinator at Joyce S. Osei at (713) 794-1442 or email the Clinical Coordinator at JSOsei@mdanderson.org. You can then mail or fax the forms back (again, the proper addresses and contact numbers are right on the Short Form). It is important to answer all of the questions, including those about other diseases, and to state whether affected family members are on your mother’s side or father’s side of the family.

The Short Form has questions asking about the “proband” in your family. The proband refers to the first affected person in your family who registered. If you are the first or only person registering, you automatically become the proband and do not need to fill that in. We connect families in the computer database by this information, so it is important for you to list any proband if you know that someone in your family has registered before you.

The second part of the Registry is optional. It involves completing a longer questionnaire called the Long Form, traveling to one of the participating sites (Houston, Denver, Minneapolis, New York, or San Francisco), having a brief skin exam, and donating blood for genetic and other research. The registry cannot pay for any travel expenses, but there is no charge for going to one of the sites and participating in the second part of the Registry.

The National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS) has funded the National Alopecia Areata Registry since 2000, providing over 6 million dollars to establish it and to gather initial information and samples. Federal funding for the registry ends on March 30, 2012, and then NAAF will continue to maintain the registry. The registry funding by NIAMS indicated its commitment to advance research regarding alopecia areata. The registry has created an enormous opportunity to advance basic, clinical and translational studies in alopecia areata. It also provides an essential resource for all investigators interested in studying alopecia areata and stimulates opportunities for additional research support from federal and private sources.

Hi Everyone,

I am so excited to share a sensational new product line with you that has been developed especially for women with little or no hair.   It requires NO tape or glue, yet provides a secure, confident fit.  And unlike a the old vacuum fit wigs on the market, they are light, breathable, comfortable and natural looking. 

These wigs are perfect for women living with Alopecia Totalis or Universalis.  This line was 2 years in the making - the women who participated in the market research for the Gripper prototype were all previous Follea wearers and/or vacuum fit wearers - they have all given the new "Gripper Cool"  2 Thumbs Up!  It's especially great for sport enthusiasts and people with active lifestyle's.

Follea offer's the "Gripper Cool" in 3 styles, 9 colors and 3 cap sizes - available immediately!  Call or email us to schedule a complimentary consultation appointment to see this new line.

They can also make to order the other gripper types; Gripper Sport; Gripper Active and Gripper Luxe.  Any of Follea's Luxury or Lifestyle wigs can be madewith the Gripper Cap construction for an additional charge.

We LOVE this new line and we think you will too - call or email us with any questions or check out more information on our website at http://www.williamcollierdesign.com/follea.html

Hi Everyone,

I had a consultation today with a young women who noticed her first bald-patch a year ago, she finally decided she wanted to do something about it and came into our Salon to learn about the various options available to her.  She was so surprised to hear about the large number of women we work with on a daily basis who are living with Alopecia.  She had been feeling alone and stressed about her situation and  was comforted to see photo's of our clients who were beaming with joy because of their new hair additions.  She left our salon with a solution that works wonderfully for her and information on NAAF to provide an on-going support system as she goes forward.  

I can tell you from first-hand experience that sharing your story can make a huge difference in someone's life - even if you never meet them or know it - you can help bring light into someone's life.  Please consider sharing your story with NAAF.  

If you're one of our clients, and you feel inspired, we'd love to post your personal testimonial on our website to help other's find the perfect solution that can help them live fuller lives.

As always, I welcome your comments and questions.

Warm Regards,

Judi Collier

Share Your Inspirational Story

Do you have a story to share about your experience with alopecia areata? We welcome your feelings and thoughts about how you have come to terms with being a parent of a child with alopecia areata, being an adult with alopecia areata or being a young person with alopecia areata. Once we receive and review your submission, we will let you now if and when it will be posted here.

Please email your story as an attachment in WORD, to mail@naaf.org.
Subject line should read: NAAF Inspirational Story for website

Please include your name (and age, if desired). If you have them, please include 1 or 2 photos in jpeg file format.

http://www.naaf.org/site/PageServer?pagename=stories_photos_tell

For most children the holidays bring feelings of excitement and wonder. For 11-year-old Michael, however, the 2008 holiday season brought him sadness and fear; he returned from holiday break with undeniable hair loss.

• $25 can go toward educating someone just diagnosed about this disease and finding others with it
• $50 can aid in creating resources to help a child educate a potential bully
• $100 can assist with providing a young adult with the funds to help purchase that perfect hair
• $500 can help in allowing a researcher to go one step further toward looking for the missing link

I hope we can count on your support!



Vicki Kalabokes, President & CEO

P.S. Tell a friend about this campaign and help us provide more miracles to kids like Michael.

Hi Everyone,

I've included some general information about Alopecia and it's causes from Wikipedia - feel free to click on the link to go directly to the Wikipedia website.  Here at William Collier Design we offer multiple options for those living with hair-loss - we specialize in providing custom full-head prosthetics (wigs) and hairpieces that look so natural they are virtually undetectable.  We are always here to answer your questions & we offer free complimentary consultations to those who desire more information on the hair loss solutions we offer.

Please don't hesitate to call us (1-877-457-2322) or email us info@williamcollierdesign.com with any questions or comments.

Judi Collier

Alopecia

From Wikipedia, the free encyclopedia

 

Alopecia or hair loss is the medical description of the loss of hair from the head or body, sometimes to the extent of baldness. Unlike the common aestheticdepilation of body hair, alopecia tends to be involuntary and unwelcome, e.g., androgenic alopecia. However, it may also be caused by a psychological compulsion to pull out one's own hair (trichotillomania) or the unforeseen consequences of voluntary hairstyling routines (mechanical "traction alopecia" from excessively tight ponytails or braids, or burns to the scalp from caustic hair relaxer solutions or hothair irons).

In some cases, alopecia is an indication of an underlying medical concern, such as iron deficiencyWhen hair loss occurs in only one section, it is known as alopecia areata. Alopecia universalis is when complete hair loss on the body occurs, similar to how hair loss associated with chemotherapy sometimes affects the entire body.

Epidemiology

^{The condition affects 0.1%–0.2% of humans, occurring in both males and females, though far more females than males.  Alopecia areata occurs in people who are apparently healthy and have no skin disorder. Initial presentation most commonly occurs in the late teenage years, early childhood, or young adulthood, but can happen with people of all ages. As it has happened before.}

 ^Types

^{The most common type of alopecia areata involves hair loss in one or more round spots on the scalp.}

^{Hair may also be lost more diffusely over the whole scalp, in which case the condition is called diffuse alopecia areata.}

• ^{Alopecia areata monolocularis describes baldness in only one spot. It may occur anywhere on the head.}
• ^{Alopecia areata multilocularis refers to multiple areas of hair loss.}
• ^{The disease may be limited only to the beard, in which case it is called Alopecia areata barbae.}
• ^{If the patient loses all the hair on his/her scalp, the disease is then called Alopecia areata totalis.}
• ^{If all body hair, including pubic hair, is lost, the diagnosis then becomes Alopecia areata universalis.}

^{Alopecia areata totalis and universalis are rare.}

^Causes

^{Alopecia areata is noncommunicable, or not contagious.It occurs more frequently in people who have affected family members, suggesting that heredity may be a factor, and at least one of the genes involved has been mapped to chromosome 8.  In addition, it is slightly more likely to occur in people who have relatives with autoimmune diseases.}

^{The condition is thought to be an autoimmune disorder in which the body attacks its own hair follicles and suppresses or stops hair growth. There is evidence that T cell lymphocytes cluster around these follicles, causing inflammation and subsequent hair loss. An unknown environmental trigger such as emotional stress or a pathogen is thought to combine with hereditary factors to cause the condition. There are a few recorded cases of babies being born with congenital alopecia areata; however, these are not cases of autoimmune disease because an infant is born without a fully developed immune system.}

^Diagnosis

^{Alopecia areata}

^{First symptoms are small, soft, bald patches which can take just about any shape but are most usually round. It most often affects the scalp and beard but may occur on any hair-bearing part of the body. There may be different skin areas with hair loss and regrowth in the same body at the same time. It may also go into remission for a time, or permanently.}

^{The area of hair loss may tingle or be very slightly painful.}

^{The hair tends to fall out over a short period of time, with the loss commonly occurring more on one side of the scalp than the other.}

^{Another presentation of the condition are exclamation point hairs. Exclamation point hairs are hairs that become narrower along the length of the strand closer to the base, producing a characteristic "exclamation point" appearance.}

^{One diagnostic technique applied by medical professionals is to gently tug at a handful of hair along the edge of a patch with less strength than would be required to pull out healthy hair. In healthy hair, no hair should fall out or ripped hair should be distributed evenly across the tugged portion of the scalp. In cases of alopecia areata hair will tend to pull out easier along the edge of the patch where the follicles are already being attacked by the body's immune system than away from the patch where they are still healthy. Professionals usually remind patients that the hair that is pulled out would eventually fall naturally. The test is conducted only once to identify the condition and rule out a simple localized hair loss condition.}

^Treatment

^{About 50% of patients' hair will regrow in one year without any treatment. If the affected region is small, it is reasonable to observe the progression of the illness as the problem often spontaneously regresses and the hair grows back. In 90% of cases, the hair will, ultimately, grow back. In the other 10%, only some or no hair will regrow.}

^{In cases where there is severe hair loss, there has been limited success treating alopecia areata with clobetasol or fluocinonide, steroid injections, or cream. Steroid injections are commonly used in sites where there are small areas of hair loss on the head or especially where eyebrow hair has been lost. Some other medications used are minoxidil, irritants (anthralin or topical coal tar), and topical immunotherapy cyclosporine, each of which are sometimes used in different combinations.}

^{Oral corticosteroids decrease the hair loss, but only for the period during which they are taken, and these drugs have adverse side effects.}

^{For small patches on the beard or head it is possible to suppress with topical tacrolimus ointments like Protopic. Symptoms may remain suppressed until aggravated by stress or other factors. Treatment with tacrolimus is recommended only for short periods of time due to adverse side effects.[citation needed]}

^{Initial stages may be kept from increasing by applying topical corticosteroids. However, topical corticosteroids frequently fail to enter the skin deeply enough to affect the hair bulbs, which are the treatment target.}

^{In terms of adapting to the disease rather than treating in an effort to cure, there are also many options available. Wigs are often used by those with Alopecia, particularly Alopecia Totalis, in which hair is entirely lost from the scalp. Wigs are available at many levels of development and technology, including wigs with suction mechanisms to keep it firmly attached to the scalp. Most of the wigs available are so well made that it is impossible without close investigation to tell whether they are a person's actual hair, or a wig.}

^Prognosis

^{In most cases that begin with a small number of patches of hair loss, hair grows back after a few months to a year. In cases with a greater number of patches, hair can either grow back or progress to alopecia totalis or, in rare cases, universalis.}

^{Effects of alopecia areata are mainly psychological (loss of self image due to hair loss). However, patients also tend to have a slightly higher incidence of asthma, allergies, atopic dermal ailments, and even hypothyroidism. Loss of hair also means that the scalp burns more easily in the sun. Loss of nasal hair increases severity of hay fever and similar allergic conditions. Patients may also have aberrant nail formation because keratin forms both hair and nails.}

^{Hair may grow back and then fall out again later. Episodes of alopecia areata before puberty predispose chronic recurrence of the condition. Pitting of the fingernails can hint at a more severe or prolonged course.[citation needed]}

 ^{Psychosocial issues}

^{Alopecia can certainly be the cause of psychological stress. Because hair loss can lead to significant appearance changes, individuals may experience social phobia, anxiety, and depression. Some psychologists have even gone as far as to describe the feelings of loss and depression felt at the onset of the disease as being similar to those felt by people afflicted with terminal illness. In severe cases where the chance of hair regrowth is slim, individuals need to adapt to the condition, rather than look for a cure}

Hi Everyone,

This book was highly recommended to me - I haven't had a chance to read it myself but I would love to hear your feedback on it - please feel free to post your thoughts! 

I have never had to experience what it would be like to live as a women witnout hair in our culture - a culture that prizes outer beauty above all else -  but I meet women experiencing hair loss every day in my salon and I am continually awed by the grace & strength these women show on their journey to finding a solution that works for them.  All of us at William Collier Design are honored to share a supporting role on their life journey and I am ALL for anything that promotes the truth that, as women - carrying the spark of the divine feminine within us - we are all perfect and beautiful....just as we are.

I hope this book promotes that feeling - as always I look forward to your feedback!

Judi Collier

NAAF Marketplace Book Wins Two National Book of the Year Awards 

"If Your Hair Falls Out, Keep Dancing!",  by LeslieAnn Butler, a book that one reviewer describes as “Sex and the City meets alopecia" and another as “Helpful, hopeful, funny and fabulous!” has been honored with the prestigious national Book of the Year Award by ForeWord Magazine. The book, which continues to sell all over the world, previously received another national first place award for the ReaderViews  Reviewers Choice Award for Best Body/Health Book of 2009.

Illustrated with twenty-three of LeslieAnn's paintings, "If Your Hair Falls Out, Keep Dancing!" is filled with tips on how to discuss alopecia areata with family and friends, available treatments, doctors, dating,  makeup, wigs, and perhaps most important, attitude.  Written with warmth and humor, this book helps women realize that they can enjoy and celebrate life with alopecia areata and go after their dreams knowing they're not alone. You can purchase the book at the NAAF Alopecia Areata Marketplace where 10% of your purchase dollars go towards NAAF. Visit the marketplace here.
 

Hi Everyone,

We are huge supporters of NAAF and think they do amazing work in the world - if you have the ability to support them with their auction this September we urge you to give as generously as you are able.

Judi Collier

Auction for Awareness  of Alopecia Areata

In September, Alopecia Areata Awareness Month, NAAF will be holding the inaugural Auction for Awareness of Alopecia Areata. In honor of children, women and men with the autoimmune skin disease, this online auction, with the help of eBay and Missionfish, will raise funds to enhance programming in the areas of research, support and awareness.

Please join us in celebrating awareness month by helping to make this auction a success. The more auction items that are donated, the bigger impact the auction will have on the lives of individuals with alopecia areata.

The online auction will take place over ten days, September 21-30, 2009. All NAAF family members are encouraged to donate or solicit items to be auctioned. Auction items will be accepted until September 1, 2009. Ideas for what to donate or what items to solicit for, as well as how to submit items to NAAF can be found in theAuction for Awareness Donor Handbook. And once you have the perfect item to donate to the Auction, please complete the Auction Donation Form and email a high resolution picture of the item to lisa@naaf.org.

Of course, everyone can also participate in the bidding and can engage friends,  families and community members in the bidding as well!

Thank you so much in helping to make this inaugural event a success. Families across the globe will thank you for your generosity.