Imagine within just weeks losing every bit of hair... all over. It's unpredictable and it happens. Alopecia areata is an autoimmune skin disease that can have a devastating affect on self-image, especially women's. Bald Girls Do Lunch is the only nonprofit created specifically to help women cope, gain confidence and feel a sense of community. Learn more...
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BGDL Fact Sheet
Bald Girls Do Lunch wins our 3rd Gold Triangle Award from the American Academy of Dermatology. Read more....
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Don’t wait till the last second to sign up for the Rochester dinner. Logistics matter to ensure that our table size is comfortable and conducive.
It’s magical to eat, share and connect with other women who all have some form of AA or a scarring alopecia.
Theme: “Alopecia Options” ……it’s all about you!
….for many guys and gals. But did you know there’s only ONE razor that’s been designed specifically to shave the head? Think about it…..you have a veritable museum of razors in your bathroom, but every one of them was designed to shave something flat: a face, a neck, a thigh, an underarm. Use referral code BGDL for 20% off your first purchase at headblade.com
You’ll get the best head shave ever in the quickest time with the headblade razor. Don’t let the little stragglers spoil your bald beauty.
Eat. Talk. Share. It’s dinner and you’re invited! Connect with other local women with alopecia areata and cicatricial alopecia.
Research updates. Beauty advice and so much more!
Make the connection…you’ll feel great! Read testimonials here.
Invitation and rsvp info.
Bald Girls Bagel Brunch……the New York City launch of the 2010 International Women with Alopecia Month.
BGDL spokesperson Miss Southern New York, Faren Collins, along with women from the tri-state region shared food, drink and camaraderie way past the scheduled brunch time at Tal Bagel. Thank you Jocelyn for making it all happen!
Don’t forget….we need advance head count and rsvp for our July 21st meet-up in Norwalk, CT.
Another mammal showing increased frequency of alopecia areata is the Eringer cow, as observed by their breeders in Switzerland. Eringers are bred for their horn-locking, feisty but bloodless fights with each other, while being non-aggressive to humans.
Wonderful BGDL supporters, the DeMers, first met up with BGDL last summer driving many hours from Idaho to join the fun of our Salt Lake City, UT dinner.
This summer the DeMers seek fellow Idahoans for event planning and women’s alopecia awareness back in their home state.
Are you in Idaho or nearby? Contact events@baldgirlsdolunch.org and we’ll put you in touch with the DeMers for more info.
The Editor’s Summary (July 1, 2010 Nature magazine) puts it simply.
“The genetic basis of alopecia areata, a common autoimmune disease that causes disfiguring hair loss due to the collapse of immune privilege of the hair follicle, is largely unknown.” Key words that follow in the editor’s summary are “association study”, “implies the involvement”, and “significant associations”.
So here at BGDL we say: continue to use all your best and beautiful Alopecia Options ™; help us grow so we can help you get you connected to other women; and from time to time check back at the progress of aforementioned associations and decide how you’re going to live beautifully and confidently today while others keep looking down that more distant and elusive road.
At the founding of BGDL , medical and research updates were frequently posted both here and on social networking sites where questions and discussions frequently arise. This was purposeful - to correct misinformation and better educate on what’s accurate and what’s media hype.
Going forward, the work I do to assess research news and post links to this information will appear only on this blog. To locate all postings about research, click on the research tag below. - Thea Chassin, founder and president BGDL
With AA in the mainstream and blogosphere news a lot lately, good time to talk more about numbers. The data source is the February, 2010 “Alopecia areata update” by Alkhalifah et al. in the Journal of the American Academy of Dermatology.
In the USA, AA is estimated to occur in 0.1% to 0.2% of the general population.
The lifetime risk is 1.7% of the population (any occurrence at some point over a lifetime). This number is often emphasized by advocacy groups because it’s the biggest number. For example, when cancer advocacy groups say ” 1 in 9 women…” that’s also a life time risk number, not the prevalence of the disease in the population.
It’s a common disease encountered by dermatologists, with a frequency from 0.7% to 3.8% of patients seen in dermatology clinics. This is higher than the “general population” percent because people with a skin disease are more likely to go to a dermatologist than people without a skin disease.
It’s easy to bring everyone into the same loop at the same time. Let us know and we’ll provide copies of our award-winning brochure, “How are You Nurturing Your Self-Image?” along with “About Alopecia Areata” from the National Institutes of Health.
Don’t forget our commemorative shirt and other gifts this summer. Go creative and restyle for the personal touch.
Send brochure requests to info@baldgirlsdolunch.org
“Sister Queens” - A charming tale of friendship for every little girl by Faren Collins.
Author, BGDL ambassador and Miss Southern New York, Faren Collins, will be signing your copies at the Bald Girls Bagel Brunch in NYC, 7/17.
Order your copies today. Here’s how.
Go to www.Goodshop.com .
Enter Bald Girls Do Lunch as your charity where it says, ” Who Do You Good Shop for?”
Click on Amazon and enter “Faren Collins” in your search box.
While we can’t all be as beautiful as Kayla Martell, alopecian and Miss Delaware, men and women alike can feel beautiful and have beautifully shaved heads.
Buy the favorite head shave products of BGDL at Headblade.com - the design award winner and only product created to shave a round surface.
Enter BGDL as the Referral Code for 20% off your first purchase.
Recognition for the work we do for women gets noticed in all kinds of ways. View the list.
On an alopecia social site, much commentary is being made for a segment of The View on 6/29/10. What began as a mention of Kayla Martell (with her photo in the backdrop), the alopecian and new Miss Delaware, moved rapidly to chatter about black women’s head shapes and white women’s head shapes with a guest co-host making reference to the Saturday Night Live ConeHeads. So is it rude, silly, stupid, insensitive or just unimportant what was said? Did they intend to make fun of bald women like Kayla and miss an opportunity to be more supportive of the people she represents? Or was it spontaneously off the top of the head entertainment? Anyone who watches realizes that the show’s a tabloid on steroids filled with ridiculous comments. ( ie do a ‘cleanse’ to get parasites out of your system.”)
Here’s one of my responses in that discussion for those too young to know THE Coneheads.
The ConeHead family is a famous part of the early years with the original SNL cast. Hulu has an online video with Steve Martin as the IRS agent visiting the ConeHeads before anyone had ever heard of Steve Martin.
I do ressemble one of the ConeHeads with my hair off. So what.
The ConeHead characters are iconic in American TV humor. They are very bald. They are very white. They are a loving cast of characters who always had a strong family bond. There should be more families with values like Beldar ConeHead and his clan.
Thea
Follow me @alopecia
I cannot take claim for this and I don’t even know who to attribute it to. Though it was originally written in reference to new genetic markers for mental illness, it applies equally and perfectly to the super-caffeinated news coverage of a hair loss gene this week.
“The thing to keep in mind is that genetics is often just a predisposition to a problem, not a 100% indicator that something will develop. It’s good that some scientists are trying to isolate genes. It’s also good that other scientists are learning how environmental factors activate and deactivate certain genes; especially interesting is the possibility (as with some research on autism and fever) that genes that get switched in one direction can reverse direction during the lifespan. Intake of vitamins (especially vitamin D, the only vitamin whose creation is primarily endogenous) and nutrients, environmental toxins, and psychosocial stress all interact with our genes in ways that are not yet clear. It seems that new branches of science should be created that focus on the connections between disparate research and theories. There seems to be way too much compartmentalization and specialization where this type of research is concerned.”
Kayla Martell: Best wishes as Miss Delaware and your feature in today’s People Magazine.
Puzzling.
Excerpted from the CNN Health blog 6/30/10 is the modest inclusion in ” Researchers Find Gene Linked to Hair Loss”
“Christiano’s team looked for a correlation between how many genes….. people with different severities of alopecia areata carried and found that people who carried 13-14 genes had disease that did not progress, while those with 16 or more often progressed to alopecia universalis or total baldness. With this new data, Christiano and Columbia researchers are developing a genetic test that may eventually predict the severity of the disease.”
Compared with press release 6/30/10 from the National Alopecia Areata Foundation, a funder of AA research in “Acclaimed Geneticist Finds Basis of Alopecia Areata”
“Included in Dr. Christiano’s discovery, however, is the ability to now predict with accuracy the progression of the disease in a patient. Using the number of genes associated with disease as the marker, a genetic test has been created that can indicate the severity of disease. For the patient, this means that one will be able to determine the likelihood of their bald patch progressing to complete body hair loss.”
If there was a genetic test available, wouldn’t that be big news all by itself?
It’s simple. Because in a news cycle like we’re in right now with a recently published genetics study about the identification of genes for hair loss, women feel worse than ever. Yes, worse than ever. Consider this:
#1) Researchers have been identifying genes for all kinds of diseases in labs around the world for a very long time and with ever more exacting tools.
#2) The identification of genes, while noble and hard work, is light-years away from anything to do with finding treatments and cures. Look at the history.
#3) Not one iota of this work, as earnest as it is, helps a woman living with alopecia areata today.
#4) The oft heard expectation that if THEY will find a cure, if THEY would be more interested in hair loss as a problem, then I will feel better. This belief is long held for many and a giant step in the wrong direction. Actually, not a step at all. It cements women into immobility, wallowing in self pity, unable to take charge of their lives.
#5) Because in comments pouring out below the hair loss gene blogs, women still lament their sadness for feeling ” freakish”, “abnormal”,”strange” and worse. They want someone to fix them. It doesn’t work that way.
#6) Because we know how to push that self-talk not just to the back burner. We know how to get it off your stove.
Did you ever provide DNA (blood sample) and survey answers for the long form of the NAAR (National Alopecia Areata Registry) in the US?
Did your questionnaire include that you’re of European ancestry?
If you did, then your DNA might have been used in the study, published this week in Nature, which used DNA only from people who self-reported European heritage.
Title: “Genome-wide association study in alopecia areata implicates both innate and adaptive immunity” .
Cautious patience advised: not a clinical trial, not a cure, not a treatment, not a proof. Geneticists work hard on all kinds of diseases and find ever newer ways to identify and tag genetic material. Improved technologies make identification ever more detailed.
How many diseases have modern day cures even with the tagging of genetic markers, decades of research and sometimes even boatloads of funding?
“Shine a Light on Alopecia” July 12-16, 2010
“Bald Girls Rock” concert” - July 31, 2010
North Carolina venues. Contact JenLowe74 at Gmail dot com to get involved for NC alopecia awareness and Women with Alopecia Month 2010.
Contact Jen for tickets.
When your gift 2010 Women with Alopecia Month t-shirt arrives, put sharp scissors in hand and have fun. Restyling is a breeze.
Express yourself and send us the photos. Cut off both the ribbing on the sleeves and the ribbing on the neck for a more relaxed fit. Don’t worry..they don’t unravel.
Make slits on the sides or one large slit down the front and voila! you’ve got an open v-neck.
Cut fringes into the hems on sleeves and bottom. Add beads. Have fun!
Send photos of “personalized” shirts to photos@baldgirlsdolunch.org. Hold a sign with your home town or near an iconic location so we can see how far our shirts are going.
Click here for the American Express Members Give program where BGDL is proudly an IRS approved nonprofit public charity.
It’s convenient, easy and helps us reach more women more quickly.
Your donations through Members Give have deep meaning to women like these across the US and online.
By credit card or by donating AMEX Rewards points, every contribution through Members Give brings the BGDL strategies for successful alopecia living into more lives. Every day.
Your funds help us: teach about wigs and insurance reimbursement; educate about treatments and clinical trials; advise on baldness in the workplace; restore self-confidence and the means to say, ” I have alopecia and it’s ok”.
Alfieri of New York City is generously gifting Alfieri premium Hair Care Products to everyone who pre-pays their July 17 NYC Bagel Brunch ticket before 7/7/10. Check out all the gift options including the mail-order 2010 commemorative T-shirt, even if you can’t be with us. Hair products must be picked up at the event.
And don’t forget. Contributions of any size are always welcomed so we can do the outreach to locate alopecian women who struggle alone. So we can expand this website. So we can promote our ponytail donation program. So you’ll honor a friend or just honor yourself for July’s Women with Alopecia month. Why? Why not!
We have a lot to do. We are donor supported. Please give what you can this season. Thank you!
Bald Girls Do Lunch earns money when you use GoodSearch to search the web and GoodShop to shop online. Support us now at GoodSearch.com
Support our cause when you search or shop online! Download the new GoodSearch/GoodShop toolbar at http://www.goodsearch.com/toolbar/bald-girls-do-lunch
There’s still time to get those graduation and wedding gifts. Shop The Apple Store from our toolbar today.
The biotech company Follica gets mentioned sometimes in the alopecia areata community even though they are not researching hair growth products for alopecia areata. Some of Follica’s research and development utilizes the hair growth research of Dr. George Cotsarelis (University of Pennsylvania) who is a known dermatology researcher who has done investigations about alopecia areata, so that confuses some folks. The confusion was amplified when mainstream media went all out loudly and indiscriminately in 2008 to parrot Follica’s press releases for new discoveries, patents and sizable equity financing for hair growing products. The buzz worked, but it came across on TV to the public as if it was applicable to all forms of hair loss.
Follica’s hair growth focus is on male and female pattern baldness known as androgenic alopecia. For Follica news and their latest round of equity financing, read more.
“Women with alopecia need the support of people without alopecia…” read more
Crow’s feet….you know…those fine lines outside your eyes? I don’t have any and this is probably why: sunglasses and Albolene. Albowhat??? This eye make-up remover you probably never heard of is the only product I have used since my first tube of mascara waaay back when in middle school; every day; 365. It sells in a big tub. Lasts a very long time. Easy to transfer to a travel container.
This stuff works extremely well and has a loyal customer following. The thin film it leaves around your eyes after you tissue off works all night long to lock in skin hydration on the delicate eye tissue. It’s keeping the natural hydration from dissipating that’s the lifelong key to great skin. And when you have alopecia, great skin is an extra asset to feeling your confident best! (And sunblock, too, but I don’t sunblock near my eyes).
Start today. Download your GoodShop.com BGDL toolbar now. Visit drugstore.com from the toolbar and 5% of your purchase is donated to your favorite women’s charity, BGDL. And, you still earn drugstore.com ‘dollars’.
Don’t forget - send the toolbar link to all your friends.
Hair is a cultural obsession. When the New York Times runs a political feature on the topic of hair, you know how deeply ingrained this is. While women with no hair, patchy hair and wigs feel singled out for extra scrutiny (by other women in particular), it helps to remember the big picture: in cities big and small and on both sides of the aisle, hair’s both culturally significant and a big non-issue. Jennifer Steinauer’s Times article: An Early Campaign Gaffe Makes a Non-Issue Big
The BGDL office like our philosophy is minimalist, modern and progressive. We know and love contemporary designers. If you do too, download the BGDL GoodShop Toolbar . Shop for yourself and your list for alessi, Karem Rashid for Kovacs, Philippe Starck for Kartell, Rosenthal, Kohler, Porcher and iittala to name a few - with lots of sales and free shipping at allmodern.com. Be sure to start your shopping with our toolbar so that GoodShop.com will donate 3.5% of the purchase price to BGDL. Sweet. Put the fun back in fund-raising!
Bald Girls Bagel Brunch…an event of International Women With Alopecia Month.
Click here to buy brunch tickets and use the same form to order any quantity of 2010 Women with Alopecia Month awareness t-shirts .
Summer special: Your WWA awareness t-shirt is now available as our gift to you with an online tax-deductible donation of only $23.
Get yours while supplies last! S-M-L-XL
With great pleasure we announce that Dr. Mark G. Lebwohl, Professor and Chairman of Dermatology at the Mount Sinai Medical Center in New York City joins Bald Girls Do Lunch as our Medical Advisor. Dr. Lebwohl has a distinguished career in dermatology and has authored or co-authored over 400 publications. Dr. Lebwohl has written or edited several books including the first atlas devoted entirely to cutaneous manifestations of systemic disease, and the leading book on dermatologic therapy, Treatment of Skin Disease. He is actively involved in clinical trials of many new dermatologic treatments.
Use this link to gain access to the invitation only, high end designer discount site, Beyond the Rack. Then, every time you shop BTR, take a moment first at GoodShop.com (or it’s faster if you download the BGDL special toolbar) which signals BTR to donate 2% to our cause. Win-win. Today, for example, Tiffany silver bracelets and earrings are deeply discounted.
Jocelyn, NYC Alopecia Ambassador, with the 2010 T-shirt in honor of Women with Alopecia Month. Photo.
Shirts are available for $15 each plus $5.50 shipping and handling or free with a $50 online donation to BGDL.
Specify S-M-L-XL while supplies last. P O Box 9122, Scarborough, NY 10510 or use the Donate button.
Mark Chassin’s nominated in Modern Healthcare’s “100 Most Powerful in Healthcare”. Voting ends June 25. Forward to friends: http://bit.ly/PowerfulHealthcare
Don’s miss this clip: Embrace Your Flawz
Check out the fun and camaraderie of our style and substance lunches in Philadelphia and Chicago, May 2010.
Click here for photos of these and more.
While the NAAR page on the MD Anderson website states “Nearly 2% of people in the United States, many of them children, suffer from alopecia areata, a skin disorder that causes hair to fall out in patches….” this very recent update (February 2010, Journal of the American Academy of Dermatology) makes it clear that the prevalence of the condition is 0.1% 0.2% in the United States.
It would be more accurate for the MD Anderson site to say that the lifetime risk is 2%.
Speak out! What do you want Americans to know about women and alopecia?
While taping a lengthy pubic affairs radio interview next month, (Disney owned station), Thea’s allocating one of her segments to reading off the comments you send in. The more detailed the better. We know that women want to send the message, ” We’re not sick, it’s alopecia”. What bugs you? What else do you want the public to understand? Indicate if you want your name mentioned or not.
Send to thea@baldgirlsdolunch.org before June 10, 2010.
One of the most frequent complaints from women with alopecia areata and extreme baldness enjoying a wigless day is being mistaken for a cancer patient. Unsolicited touching and whispering happens to us (not bald men) in everyday places like the check out line: “How’re doing?” or ” I’m in the club, too” or ” My sister’s going through the blah blah treatment…….”. In the midst of a BGDL night in Los Angeles this winter, older mother and daughter sauntered by with big hellos and friendly waves: “You’ll be fine. Mom was just like you and look at ‘er now!”
People who do this claim to mean well but are exceedingly annoying.
Despite the annoyance, we can also be thankful for the now ubiquitous “cancer movements” because it’s not very long ago that the words cancer were not spoken in public, nor said on TV nor written in the newspapers nor even spoken aloud between doctor and patient. And now they are regularly. That’s a good thing. Today we say cancer. Tomorrow we’ll be saying alopecia.
Not 1. Not 2, but 3 enthusiastic makeup artists will do private sessions for brows, lashes and more. They’re excited for the opportunity to help our brow-less faces.
Remember: Bald is never required at any Bald Girls event.
May 15 in Chicago. http://bit.ly/aeNqZ2
Lunch. Guest speaker. Discussions led by Thea Chassin. Follea.com and FreestyledHair.com reps. Professional make-up artists. Experience the camaraderie. Meet other women who truly understand the same challenges.
Your hair. Your head. Your life…..We make it even better.
Contact info@baldgirlsdolunch.org or 800.578.5332
Here in the US, many people with alopecia areata have been misguided to think that the sum total of alopecia areata research are the few projects funded by one US based group raising money for research. Hair disease research is far from local….it’s truly global. And because research today does not improve the lives of women living with AA today, our mission is to make better lives for the women of today and our women of tomorrow.
Here’s a peak at one of the AA topic presentations for this summer’s Australian-hosted World Congress.
Let’s face it. Most women with alopecia area are still hiding in plain sight. Under wigs. Not talking about it to anyone. Therefore, unable to meet others because they don’t recognize each other, don’t want to talk about it, feeling more abnormal and wanting to hide more. It’s a closed cycle that we’re working to break open.
At the same time, we know that when BGDL is the subject of positively helpful media articles especially in print and on radio, women find our lunches and find each other. The cycle of secrecy and shame is interrupted.
Become a sponsor today. Pick your city. Bring some friends and co-workers on board. 10 friends each ask 10 more friends giving only $10 each. Gets us where we need to be quickly. With your support, we can make enormous strides in doing the publicity, reaching the women and holding the lunches for every city on our waiting list.
Our wonderful NC Alopecia Ambassador in Winston-Salem has exciting plans in the works for July’s awareness and benefit events across the state. To get involved in your city, contact events@baldgirlsdolunch.org, subject line North Carolina.
Save money and make mom proud this Mother’s Day by buying her gift on GoodShop and supporting a cause she cares about!
This year, make your special nonprofit at GoodShop.com BALD GIRLS DO LUNCH
Over 1,400 merchants are posting special coupons for your Mother’s Day purchases. And in many cases they’ve increased the amount that they’ll donate to your designated nonprofit.
Here are just a few examples (please spread the word!)… 1-800-Flowers ( 7% donation to our cause); Pro Flowers (7%) Bobbi Brown (5%); Clinique(4%); Spa Finder (3-5%; Red Envelope (7%); Staples (2%)
The Women with Alopecia 2010 album.
Before you send flowers to mom with ftd.com, go to goodshop.com and enter Bald Girls Do Lunch as your charity. Then continue in seconds with your flower order. Your order sends a 7% donation to BGDL…just for loving mom the way you always do! Thank you for helping us bloom and grow.
A private showing of “Hairless”, the award-winning short indie film.
Where? The BGDL laptop at lunch in Potomac, MD 4/24 and Philadelphia, PA 5/2.
Screening during the wig-education and makeup workshop in Chicago 5/15.
Meet us in the Empire State……New York state’s capital region for our educational and inspirational workshop, “Bald is In …and So are Wigs”… our inaugural program of International Women with Alopecia Month.
Sunday, June 27
Buca di Beppo
44 Wolf Road, Colonie, NY
11:30 am - 3 pm
To ensure that you receive all the details, Join our List and include a postal address.
the newest hair and caps from luxury wig manufacturers representing Follea and FreestyledHair AND…
Talented, charming, beauty queen Miss Southern New York, Faren Collins, joins us to share her story of passion and advocacy for women with alopecia areata. Find out how Faren gave the NY judges their first “alopecia education”. Hear Faren’s strategy for success in her quest to be Miss New York state this June. AND…
Makeup artists from London Eyes, Inc. International Academy of Makeup providing individual makeup consultations with each attendee. AND…
always enjoy our camaraderie and Thea’s talk at the table wearing wigs or your bald look.
May 15, 2010 . Click here for the invitation and all details.
Chicago, Illinois (private dining room Maggiano’s Restaurant)
rsvp: info@baldgirlsdolunch.org
Are you running or walking for charity this season? Are you supporting women with alopecia and the year-round outreach to women of Bald Girls Do Lunch?
Women with alopecia wish the public knew more about our condition. So please contact us for supporter T-shirts when you put the fun in fundraise and your friends cheer you on this summer during Women with Alopecia month, July 1-31 2010.
Thanks to the many supporters already in our network as Alopecia Ambassadors ™ our 2010 Bald is In ™ awareness program takes off with a sharp new logo. Check it out!
This week attention is on the announcement of a new “hair loss” gene in a study led by Dr. Angela Christiano of Columbia University - revealed previously in scientific meetings and published in the journal Nature this week.
The researcher’s personal interest in and search for a hair loss gene started in the late 1990’s as reported in the NY Times. At that time, her quest led to a family in Pakistan with the hereditary condition Hypotrichosis Simplex and an observation about chromosome 8. Since then additional DNA analysis has yielded expanded data. The news this week is on a mutation of chromosome 18.
How does this relate to alopecia areata? There is no connection. But since it’s in the news this week, it’s a teaching moment….especially because just the other night the mother of an adult child with AA had this exchange:
Mother excitedly: “They found the hairloss gene!!”
Chassin: “It’s not all that new and there’s nothing about it that helps alopecia areata patients”
Mother: “But it’s true! It’s all over the news today! They found the gene.”
(sigh)
For a long time, genetics researchers at Columbia University ( USA) , Haddassah-Hebrew University Medical Center (Israel) and other sites have tried to learn about the genes of hairloss. One thing is sure - It’s not one gene. It’s a complex of traits. As a little background to the news this week about the genes of hair loss, here’s info from 2005 to help put into perspective how complex it is and how far today’s news of “may” “could” and “further study” is from finding good treatments and cures.
Join our list today to get all the details for lunch followed by luxury wig demos in Chicago. Meet representatives from Follea, Freestyled Hair and more.
Faren Collins joins us in Chicago…. a month before the next step to winning the Miss New York state pageant on her platform cause of Women with Alopecia awareness.
….is the ONLY state in the United States from which no woman has requested a Bald Girls lunch.
To help us get to Vermont, the other 49 and all the provinces of Canada more quickly with our lunch program, why not get up some donations from your friends, join the Friends of BGDL and tell us where you’d like to give women with alopecia their first lunch of a lifetime.
Eyes, brow bones, shape and location are not perfectly symmetrical on anyone’s face. So start with the easier one - and that’s going to be the right eye if you’re right handed. Read more…
Quick questions about BGDL lunches: do I have to be bald or come bald or wind up bald in a public place? Not at all! Learn more here.
I’ve been extolling the HeadBlade ever since I tried one. This is no ordinary shaver. This award-winning design was created to shave a curved surface. Now it gets even better. Everyone’s invited to use this link and “referral code BGDL” . First time buyers get a nice discount on your purchase and the BGDL earns credit, too.
And we’re happy to announce that HeadBlade.com is supplying samples for our attendees at Celebrate 3 on April 14th in New York City. Thank you Todd, Eric and the HeadBlade team.
If you really want to receive our event invitations for your region, we recommend you DO NOT sign up with a Yahoo, Hotmail or other free email address. With spam filters and mailbox quotas, it is increasingly difficult for us to deliver to those inboxes.
Your information is always 100% private and will never be shared. Please sign up with a postal address and an email so we can deliver our invitations to you as efficiently as possible.
In June, 1991, a case came to trial in the US district Court, ND, Texas, Fort Worth Divison. The plaintiff won her case against Prudential Insurance, but in 1992 on appeal, the $440 award toward plaintiff’s cranial prosthesis and legal fees was reversed in the US Court of Appeals, fifth circuit. Read the judge’s decision for the appeal.
Here’s the original lawsuit:
Plaintiff Susan Irion, with a diagnosis of Alopecia Totalis, claimed that if Prudential Insurance was covering the cost of breast implants, penile implants, artificial limbs, larynxes and eyes for other insureds that a custom made cranial prosthesis to replace her lost body part - her hair - should also be a covered expense. Read more.
Studying twins with alopecia areata helps researchers understand the role of genes.
This study, published in 1998 in the Journal of the American Academy of Dermatolgy, looked at identical versus fraternal twins, stress and cytomegalovirus (cmv) and concluded: A 55% concordance rate in identical twins and AA occurring in families support a genetic component as well as possible environmental triggers that remain unknown.
“It starts with leadership. For me, it’s an absolute joy to help women with alopecia areata find others who live nearby. At last, they get the chance to talk freely about things they’ve never discussed with anyone. Ever. We are that opportunity. We’re designing a future full of beautiful alopecian lives.” - Thea Chassin, president BGDL
JackFM radio in Dallas is in the midst of a March Baldness contest. Anyone can log on and vote here. once a day . 18 year old Eillischa who has alopecia universalis is the only female in the contest. She’s the only person totally bald in the contest. In fact, the contest was promoted for bald men. And this young woman who has never gone anywhere previously without her wig, has stepped up to shine a light on women who can’t grow hair.
Right now, Eillischa trails her opponent in her bracket 45% to 55%.
Vote today and again once everyday and bring her over the top for alopecia publicity and her cash prize.
Update 3/28/10 Scott’s pulling ahead since last night and our girl’s down to 39%.
You might have the view if you live in the United States that the only research being funded and performed or even that the only research of value are the few and minimally funded studies supported by a national foundation based in the US.
Scientists on many continents, especially in genetics labs, are trying to learn about the genes of people with alopecia areata compared to control groups without aa. Here’s one published in the Journal Autoimmunity in 2008 about a genetic study from Kuwait University in Kuwait. It’s written for other geneticists, not the general population, so it’s very technical, but knowing that this work takes place helps demonstrate the global range of scientists looking at aa.
April 24, 2010….Potomac, Maryland
May 2, 2010…Philadelphia, PA
Important Reminder: you MUST add info@baldgirlsdolunch.org to your “safe sender list” and contacts to ensure you get our event info by email.
Please provide a postal address. We’re happy to spend the postage to ensure that when we plan events in your area, you’re getting and opening the invites.
Not so easy for many women with alopecia, but when having AA truly feels like it’s not a big deal, moving forward in life is much much easier.
Meet Thea Chassin in New York City on April 14th or in Maryland on April 24th and find out how you, too, can say to yourself, “Bald? So What!”
Show other people how you feel with a “Bald? So What!”(tm) t-shirt, mug or button.
We mentor the little girls….tomorrow’s women with alopecia. While our lunch and discussion format is for 18’s and over, our beauty events like this one in Larchmont, NY (an AAD award-winning event) brought together all ages for camaraderie and inspiration. It helps the parents of children to meet women who have successfully managed the challenges of feeling whole and normal in a culture that loves hair. Photo of Thea, her friend Sam and the BGDL teddy bear from our logo store.
After recently gifting a pretty headwrap to an acquaintance in the midst of life-sparing treatment, came back this note:” …so very much appreciated as I have been looking for something to wear besides a wig. Seeing how you and all those beautiful women on your website face permanent hair loss with such grace and dignity has helped me to put my own temporary loss into perspective. So, thank you for the scarf, but thank you especially for the gift of perspective.”
The number of women emailing and saying I feel “like a freak” for having alopecia areata makes it a stand out word among all words we see. It speaks to the big disconnect between how women with alopecia areata feel about themselves and how friends and family feel about AA and them.
When you support Bald Girls Do Lunch with a donation, your funds go right to work so we can bring more women together in more places more quickly. More women find our award-winning website. More women see our photos. More women join our list, tell us where they are and where they want to meet others like themselves.
More women long for the day when they can say, ” I no longer feel like a freak.” Please help us make those dreams come true.
April 14, 2010
To help us plan logistics well, please rsvp in advance. And you save $10 over the at-the-door price for this great night and fundraiser.
Meet Faren Collins, just crowned 2010 Miss Southern New York.…who wowed the judges to win the crown with beauty, talent AND her speech about the importance of alopecia support for women.
We encourage people with alopecia areata being part of the NAAR (National Alopecia Areata Registry). We also like to point out the kinds of studies we’re finding where researchers utilized registry data. While most research doesn’t end up with important results that lead to cures of anything, there’s a theory that looking at the genes of families like those in this study can broaden “understanding”.
“Familial Alopecia Areata and Chronic Thrombocytopenia”
Lately, I’ve asked some make-up artists (who provide service as well as sell cosmetic products) if they volunteer their time for the American Cancer Society’s ‘Feel Good Look Good’ program.The answer is almost universally yes they do or yes, they would if asked. And if I ask the same artists if they would volunteer a few hours to help our women with alopecia who have no eyebrows or lashes, the answer coming back has been, “it’s only worth my time if they buy lots of things.”
Ok…so in our country, let’s hope this is not an emerging pattern - where women with temporary hair loss due to the side effects of chemotherapy receive individual consultations donated willingly along with complimentary assortments of make-up (supplied by the cosmetics manufacturers) and women with permanent hair loss due to alopecia can’t even get donated time by the same experienced professional artists.
Is this a result of the recession or are we seeing a trend here? Send me your comments: thea@baldgirlsdolunch.org
New York’s own Faren Collins wowed judges with beauty, talent and heartfelt passion as she spoke for the cause of Women’s Alopecia.
Crowned Miss Southern New York 2010 this weekend, Faren advances to the state finals in June, 2010 for the Miss New York State title. The winner of Miss NY State goes on to compete for the Miss America title. As Faren advances, she brings her cause of Alopecia Areata Awareness with her to every pageant stage.
“Everyone on the judges panel was very interested in my cause and said they learned a lot about alopecia and the effects it has on women! There were also a few women in the audience who have suffered from it and thanked me for bringing this disease to the forefront! More then anything that was by far the most rewarding part of the pageant.” -Faren
Please write good wishes for Faren’s continued success. Email comments to thea@baldgirlsdolunch.org
And it’s always an option at BGDL events, not required.
Bald is In! 2010 (logo) is just one of our themes for the first annual International Women With Alopecia Month July 1-31.
Become an Alopecia Ambassador for Women With Alopecia Month. Contact info@baldgirlsdolunch.org or call toll free 800.578.5332
We’re a proud participant in the American Express Just Give charitable program. Enter Bald Girls Do Lunch in their Contribute Now box. With just a few clicks you can:
Donate dollars with your American Express card
Donate Membership Rewards Points
Receive an automatic tax receipt
Spread your donation out over the year
Earn rewards for each dollar you donate using an eligible, enrolled Card.
Best of all, donating online helps nonprofits like ours reduce administrative costs so we can do more with the money you give.
Right now….take just a moment and get our GoodSearch/Goodshop BGDL charity toolbar.
THANK YOU and take a look at what you’ve helped us earn so far this year! Every little bit helps. Online shopping helps us the most.
Got a competitive spirit? We’ve earned more so far in 2010 than a far older alopecia research organization. Let’s keep going!
With your businesses, friends and family all using our toolbar, the numbers will be far more impressive. Staples, BestBuy, Amazon are all available and hundreds more!
You can have the toolbar working in the background for shopping and not have to display it. A message alerts you each you’re earning for BGDL.
… we don’t help just one woman. Her work, her loves, her participation in life and all her relationships prosper. Helping one woman with alopecia helps her extended world reconnect to the whole person they’ve missed but didn’t know how to reach.
Are you looking for a charity to accept donated hair? Look no further. We have a stellar wigmaker to turn your donated hair into chic ponytail hats for woman with alopecia. Your donations of hair 12″ and longer will help us launch our Ponytail Hat Project. Contact hats@baldgirlsdolunch.org. Thank you!
“…I have a different attitude toward the whole condition and my husband noticed it immediately…read more
One purpose of this blog is to bring you research, treatment updates, and uses of The Alopecia Areata Registry ( a data collection tool) because this information is not being disseminated to the alopecia community the way I believe it should be. It also gives me an opportunity to clarify from time to time that the AAR is not funded to carry out research itself, though many mistakenly assume it is. (Blood samples from some registrants are also made available to qualified external researchers.)
An easy read:
This short abstract from the Journal of the American Academy of Dermatology uses data self-reported between 2001-2007 by registrants.
It describes the number of people who reported an environmental “trigger”, an incidence of Epstein Barr virus (EBV mononucleosis) within six months prior to their alopecia onset.
Most importantly, the abstract illustrates why collecting data in and of itself provides little useful information.
Added! Make-up artists will be on hand for our lunch and beauty event at Twin River in Lincoln, RI…easy drive from all over New England. Close to Boston and Providence.
Bring your make-up challenges! You’ll get help, answers and have a good time, too.
Bald Girls Do Lunch brow kits and sealer will be for sale.
RSVP today! Send your email to info@baldgirlsdolunch.org for all the details.
Close to many major highways and a short hop from Boston, Providence, New Haven, Worcester, Hartford, Bridgeport….it’s so easy to join us at Twin River.
Featuring our spirited BGDL lunch format lead by Thea Chassin. A professional make-up artist will be on hand to give individual help. Spend time with us while your friends enjoy the Twin River casino.
Bald never required at BGDL.
Case in point: today a blog alert pops up with a bold font headline that a major USA ivy-league university’s researchers have identified a gene for inherited baldness. It refers to a famous science magazine and gives the issue month. It says that funding was provided in part by a well known alopecia research funding source. So you might assume this has something major to do with current alopecia research. BUT…a bit more exploration and a read of the original article reveals that publication was in 1998. The baldness being discussed is a rare recessive trait of 11 members of a Pakistani family where hair fails to grow after an infant’s ritual head shave at one week of age and members are born without eyebrows or eyelashes. Genetic studies are valuable, but “news” must be taken in context.
In the blog, the principal investigator is quoted…remember this is 1998…”The discovery of this new gene gives us endless possibilities that may allow us to effectively treat hair loss and possibly baldness within the next five years.” Whether this is an accurate quote or not, I don’t know….but there are too many who still believe if it’s in print it must be so!
So…the point is this: understand that there’s context and follow back to the original source when seeing hair loss genetic “discoveries” on the internet. And try to get the whole story whenever you see any bold face announcement “We found a gene!”
Please visit the photo gallery for new additions: Salt Lake City, Phoenix, Boston and Seattle.
Enjoy!
You may have heard of a photochemical treatment for AA using systemic or topical Psoralen combined with Ultra-Violet A light therapy (PUVA). The February, 2010 issue of the JAAD reviews current treatments and states why this treatment is no longer commonly used:
“Systemic and topical psoralen plus ultraviolet A light phototherapy have been used with limited success. Long-term safety, side effects, and a high relapse rate have curtailed the use of psoralen plus ultraviolet A light phototherapy”
….”Two large retrospective studies showed that the response rate is no better than the spontaneous remission rate. Because of the high relapse rates, lack of randomized controlled trials, and the increased risk of skin malignancies with PUVA, this line of therapy has become a less favored treatment option.”
A short and meaningful radio clip from the North Bay Report ( 2008) Click and give a listen (mp3) to Bruce Robinson and Thea Chassin.
You’ve probably seen some numbers about AA, but they don’t tell the whole story. The lifetime risk of having some form of alopecia areata is estimated to be nearly 2% (1.7%)….nearly 5 million in the US by today’s census. Lifetime risk means the percentage of people who have a chance to have any type of AA( including transient episodes) over their entire life. That does not mean that nearly 2% of the current US population currently have a form of the disease.
The prevalence of alopecia areata is far lower…how many people currently have it. That estimate is 0.1% to 0.2% of the population. Big difference.
We have a far better chance of improving lives when we take your focus off finding a cure and put it squarely on finding your core… values that is.
So you happen to have alopecia. What are you letting it do to your life?
This article was researched using patient surveys collected in the NAAR ( National Alopecia Areata Registry) a multi-center data collection project based at MD Anderson in Texas. History of atopy or autoimmunity increases risk of alopecia areata.
And at the bottom here, you’ve got a list of the scientific meeting presentations and published articles using the NAAR database. Just keep in mind that the identification of genetic locations (loci) and alleles (markers) is not a straight path to anything having to do with treatment. Kind of like zebras and oranges.
…well actually rip out the cosmetics ads from magazines. Save them. Study the faces. Look closely at the eyebrows. Start looking at the eyebrows of the people you meet every day. To put your best face forward, become a brow analyst. Appreciate the power of the eyebrow. It works.
One dollar from the sale of each HairDanna is being donated to our nonprofit. Click here to read the inventor’s story.
Would you like to be a BGDL Alopecia Ambassador(TM) in your city/region for Women with Alopecia month, July 1-31, 2010?
Send message to thea@baldgirlsdolunch.org
