WooHoo NLNL (No Lights No Lycra) have a schmik web page
Who will organise the first alopecia NLNL??

http://nolightsnolycra.com/the-nlnl-story/

No Lights No Lycra is an dance community that started in Melbourne by unruly dance students Alice Glenn and Heidi Barrett in 2009. There is no light, no lycra, no teacher, no steps to learn, no technique, just free movement. NLNL is a space where you can completely let go, shake out the stresses of the week, and lose yourself in the music and the physicality of your body. NLNL is a daggy, non-pretentious place to completely be yourself.

Ditching self consciousness - Another alopeciology skill!

No Lights No Lycra - a dance craze started in East Brunswick, Oz now has 42 communities around the world.   http://ab.co/1wwDOzj

"For many of us, the idea of dancing in public is terrifying. The only time we will bust out some real moves is at home in our living rooms, when no-one can see.
But now there is a space where you can do just that, but in the company of others, because the lights are switched off". Perfect activity for the less 'out there' amongst us, age-friendly, no alcohol mayhem.
Watch the program http://ab.co/1oSmWv7






   

'Pretty Bald' a nude fundraising calendar

Fundraising nude calendars which seem a very British creation, are really popular. In 2008 it was estimated that somewhere around 6000 have been made. 'Pretty Bald', the alopecia nude calendar just released in the UK has raised thousands of pounds for the UK charity Alopecia UK http://dailym.ai/1lKrasI   

In 2008 The Daily Telegraph reported some research http://bit.ly/1wkmqe5 by Dr Pamela Turton-Turner, of the University of Tasmania. 
Her research suggested the most successful calendars are funny, the naked bodies sanitised rather than erotic, and the public must regard the charity as worthy.  She notes one of the failures was the Australian Matilda's 2000 soccer team calendar, because the images were too sexually explicit.

Did the UK calendar hit the mark? You can buy a copy for 10 Pounds from the Pretty Bald webpage http://www.prettybald.co.uk/the-calendar/ .

The art of living with alopecia - treatment decisions

Image: flyingcatsandglitter on deviantarts
http://fav.me/d738ms6

Here’s a succinct message from Dr Victor Herbert (talking about choosing alternative therapies but just as applicable to AA treatments)

"Every therapy has side effects and the potential for harm. Before trying any new remedy, get the answers to three questions
1. Is this treatment more effective than doing nothing?
2. Is it as safe as doing nothing?
If there are questions about safety,
3. Does the potential benefit exceed the potential harm?"
http://www.victorherbert.com/cv835pr.pdf

Ruxolitinib - Still looking like a treatment not a cure

Some extra info from a US radio interview with Raphael Clynes (co-investigator) on August 24th ".....We then treated a few patients - now nine patients with Alopecia Areata with a drug called a JAK inhibitor. And the results are remarkable. Six of the nine first patients treated have had excellent responses".
http://m.nhpr.org/?utm_referrer=#mobile/54288
My question - How successful a treatment is it in the long term? Will those 6 out of nine people have relapses without continuing treatment? And...this looks like progress but we still have the side effects to consider.

Another contribution to the alopeciology "art of understanding alopecia"

This video from Columbia University has Angela Christiano explaining the research that led up to the ruxolitinb anouncement. A good non technical account ..... with diagrams

Drs Christiano and Clynes at work

                                              http://vimeo.com/103265367

A nice summary of relevance of the new drug for AA

Dr Jeff Donovan, dermatologist, advises the Canadian Alopecia Areata Foundation. Read his summary of the information about ruxolitinib

http://canaaf.org/dr-donovan-ruxolitinib-potentially-new-treatment-alopecia-areata/

Ruxolitinib story in the USA - Criticisms of media coverage

Gary Schwitzer blogs on evaluating the quality of evidence and health journalism. He is a critic of reporting of the trial of ruxolitinib and raises some good questions about the NYT article we linked to yesterday
Here’s some of what he said and the questions he asks
“........ the Times was too vague about the numbers.  It explained that the drug ruxolitinib had been tested on seven women and five men.  But then it vaguely reported:
    “The results for Brian and several other participants have been significant.”   (Our questions: How many is several?  What does significant mean? Only the one patient’s – Brian’s – experience is detailed.)
It helpfully explained that “so far a few participants did not regrow hair.”  (Our question:  How many of the 12?)
It helpfully reported a quote from one of the researchers:  “It appears to work — not in everyone, but in the majority,” she said. “We need a lot more data on the long-term risks in healthy individuals.”
Read more
http://www.healthnewsreview.org/2014/08/hair-loss-treatment-data-in-3-people-gets-widespread-and-often-weak-news-coverage/

Another new drug trial announcement today

One of the arts of living with alopecia is trying to sort out what new drug announcements really mean. Here's the latest one from the US - ruxolitinib. In the New York Times, US dermatologists themselves have conflicting views http://www.nytimes.com/2014/08/18/health/alopecia-patients-in-study-grow-hair-with-new-drug.html?_r=0

The International Dermatology Patient Organization Conference June 2015 in Vancouver

Link to conference website idpoc.com

Great news!! This conference to be held next year in conjunction with the World Congress of Dermatology (WCD)in Vancouver. The Canadian Skin Patient Alliance (CSPA) represents many diagnosis groups, alopecia, psoriasis, vitiligo and more and their theme will be about promoting leadership in support groups. This is a first for the WCD conferences! A voice for patient organisations in the conference program.  Here's what the CSPA are saying

"Skin patient organizations serve a unique role with their focus on the medical, psycho-social, and health needs of the individual with a skin, hair or nail disease and with their community-based structure. These organizations’ activities include, but are not limited to: educational programs, rehabilitative and financial support programs for patients or their families; advocacy to the government and fund-raising for research. ......... By inviting the world’s patient organization leaders to the World Congress of Dermatology (WCD) 2015 to participate in a multi-day conference dedicated to leaders of dermatology patient support organizations, the WCD and the global dermatology community confirm the importance of the role played by these patient groups in promoting dermatology issues".

Yay!!!! More to come on this as the event gets closer