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AAAF – Remove GST from Wigs Petition
After more than five years of lobbying, people with Alopecia Areata are STILL paying GST on wigs! People who experience hair loss through cancer treatment have options which make them exempt from paying GST on their wigs. At the AAAF, we believe that wigs for people with Alopecia Areata should fit into the same category. We seek only consistency and fairness. But after 5 years of lobbying, the government still collects about $2.5M per year from people who are already up for significant expense due to their medical condition. Another disappointing rejection recently by the Treasurer Scott Morrison will not deter AAAF from pursuing a change to this unfair situation. We need the Alopecia Areata community, their families and friends to get behind our online petition. Together we can change this. Please click the link below and sign the petition. Please share this with all your friends. https://www.change.org/p/the-hon-sussan-ley-remove-gst-from-medical-wigs

Australia Alopecia Areata Foundation Inc.

The Australia Alopecia Areata Foundation was founded in 2010 with the purpose of improving the lives of people living with Alopecia Areata and their families.

We have three core missions.

  • Support: provide support to those with all forms of Alopecia Areata, and their families;
  • Awareness: inform the public and create awareness of Alopecia Areata;
  • Research: to support research into a cure or acceptable treatment for Alopecia Areata.

Read more

Promote positive image and respect for Alopecia Areata sufferers.
Assist individuals and families with coping strategies to live with Alopecia Areata.
Provide strategies against bullying / name calling.
Provide opportunities for Alopecia Areata sufferers to have a voice and participate in their communities
Increase awareness into our community about all forms of Alopecia Areata.
Attend schools to inform parents and school communities on the disease.
Raise funds into medical and psychological research.

JuliaWilsonJulia: Having Alopecia doesn’t have to be just bearable or just manageable. It will be part of you, but you can move on and it will not define you!
CatherineGrantCatherine - 21: Whether I have hair or not I am always thankful for what I have, rather on concentrating on what I don't have.
HeidiAHeidi: Alopecia isn’t something we should feel embarrassed or ashamed about.
stefStef: 16, telling her story through a poem.
camCam O'Rourke: 12, I first got AA in early 2010. It was a massive shock because it started off as just one tiny patch, and in about four weeks, it had all gone, apart from a couple of tiny patches.
MichelleMichelle: hair loss is something to be embraced. I'm ready for openness; I'm ready for people to be challenged; and I'm ready for bald women to feel empowered. I don't want to spend my life merely surviving as a bald woman. I'd much prefer to live.
SarahPSarah P: I’ve had ups and downs, I’ve been self conscious and I’ve been brave. I don’t know where I will be this time next year, or what my head will look like. But it’s an adventure, and its all part of my story.
JamesMillerJames Miller: Imagine you are 10 years old, and one morning you wake up to find you have a bald patch at the back of your head the size of a golf ball,this is what happened to me.
StellaStella 10 …..I’m VERY happy now in my school and I have a great family and friends and I’m happy to live a very bald and happy life!!!!!
Alex_WebAlex: Alison tells her story on son Alex ……We have a resilient, positive, strong willed young man. He may not have hair but he is healthy, wealthy and wise otherwise in his life – That’s the greatest gift of all!

News

A massive thank you from the whole AAAF team to Alana who has shaved her hair to donate the locks to be made into wigs for children with Alopecia Areata. Alana's generous support allows us to continue our mission to improve the lives of people with alopecia areata and their families.

If you'd like to find out how you can donate your hair, check out our website: www.aaaf.org.au/get-involved/donate-hair/
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Thanks so much to Vivian who has cut her gorgeous locks to support AAAF's Wigs for Kids Program. Your support is absolutely vital to helping us run this wonderful program which aids young people and their families in the costs of purchasing a wig. We hope you love your new style as much as we know your donated hair will be loved by someone who receives it in a wig. ...

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Hair regrowth after ruxolitinib treatment of a patient with alopecia areata.

Credit: Lab of Dr. Angela Christiano/Columbia University Medical Center

Seventy-five percent of patients with moderate to severe alopecia areata -- an autoimmune disease that causes patchy, and less frequently, total hair loss -- had significant hair regrowth after treatment with ruxolitinib, reported researchers from Columbia University Medical Center (CUMC). By the end of their treatment, average hair regrowth was 92 percent.

Cost is $10,000per month.

Findings from an open-label clinical trial of 12 patients with alopecia areata were published in the Journal of Clinical Investigation/Insight, alongside a paper reporting results of a separate study from Stanford University and Yale University that tested a similar drug.

"Although our study was small, it provides crucial evidence that JAK inhibitors may constitute the first effective treatment for people with alopecia areata," said Julian Mackay-Wiggan, MD, MS, associate professor and director of the clinical research unit in dermatology at CUMC and a dermatologist at NewYork-Presbyterian/Columbia. "This is encouraging news for patients who are coping with the physical and emotional effects of this disfiguring autoimmune disease."

Alopecia areata, the second most common form of hair loss, can occur at any age and affects men and women equally. The disease usually causes hair loss on the scalp, but some patients also experience facial and body hair loss, with devastating consequences particularly in children. Currently, there are no known treatments that can completely restore hair.

Previously, the Columbia researchers identified the specific immune cells and the dominant inflammatory signaling pathways responsible for attacking the hair follicle in alopecia areata, putting them into a dormant state. Subsequent experiments with mouse and human hair follicles showed that topical and oral drugs that inhibit the Janus kinase (JAK) family of enzymes, known as JAK inhibitors, reawaken these dormant follicles by blocking inflammatory signaling. Two such JAK inhibitors already approved by the U.S. FDA are ruxolitinib, a medication that is used to treat bone marrow malignancies, and tofacitinib, a treatment for rheumatoid arthritis.

"These disorders are both characterized by dysregulated signaling pathways, similar to alopecia areata, which is dominated by the interferon signaling pathway. Even though the diseases are very different, this common feature gave us the initial idea to test JAK inhibitors in people with alopecia," said Raphael Clynes, MD, PhD, adjunct associate professor of dermatology at CUMC.

To test this hypothesis, the researchers initiated a small, open-label clinical trial of 12 patients with moderate to severe alopecia areata (more than 30 percent hair loss). All patients were given 20 mg of oral ruxolitinib, twice a day, for 3 to 6 months. Participants were followed for an additional 3 months to assess the durability of treatment response.

Nine of the patients had hair regrowth of 50 percent or greater. By the end of the treatment period, 77 percent of those who responded to the therapy achieved hair regrowth of over 95 percent. A third of the responders had significant hair loss in the follow-up period after the medication was stopped, although their hair loss did not reach pre-treatment levels.

Skin biopsies performed before, during, and after treatment also revealed that responders had a reduction in levels of interferon signaling and cytotoxic T lymphocytes -- indicators of an inflammatory response -- and higher levels of hair keratins, which are proteins that indicate hair growth. These levels were similar to those in people without alopecia areata. Before starting treatment, patients who ultimately did not respond to therapy had lower levels of inflammatory signatures, suggesting that it may be possible to distinguish between responders and nonresponders.

"We are very excited about the use of biomarkers to follow the response of patients to this treatment," said Angela M. Christiano, PhD, the Richard and Mildred Rhodebeck Professor of Dermatology and professor of genetics and development at CUMC. "This will allow us to so monitor improvements in their gene expression signatures even before hair growth appears."

The drug was well-tolerated in all participants, with no serious adverse events. Those that did occur were infrequent, and included bacterial skin infections, skin allergy symptoms, and lower hemoglobin levels, which resolved with dose adjustment.

"Our findings suggest that initial treatment induces a high rate of disease remissions in patients with moderate to severe alopecia areata but maintenance therapy may be needed," said Dr. Mackay-Wiggan. "While larger, randomized trials are needed to confirm the safety and efficacy of ruxolitinib in people with moderate to severe alopecia areata, our initial results are very encouraging."

In the Stanford/Yale study, a series of patients with moderate to severe alopecia areata responded to another JAK inhibitor called tofacitinib. "Together, the two studies show that we're on the right track," said Dr. Christiano, who is a co-author of the tofacitinib paper.

The CUMC research team plans to expand their studies to include testing these drugs in other conditions such as vitiligo, scarring alopecias and androgenetic alopecia (pattern baldness) where they may also show efficacy. "We expect JAK inhibitors to have widespread utility across many forms of hair loss based on their mechanism of action in both the hair follicle and immune cells," said Dr. Christiano.
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Arti has been growing her hair for three years in order to cut her gorgeous locks to be made into wigs for people who have lost their hair through alopecia areata. What an absolutely fantastic effort Arti! Thank you so much for your generosity and support. ...

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A huge shout out to little Ruby. Just four years old, she's showed an amazingly generous spirit by donating her hair to be made into wigs for children who have alopecia. Here at AAAF, we're constantly blown away by the outstanding acts of kindness we see every day from young people like Ruby. Without their help, we couldn't do the work we do to improve the lives of people with alopecia areata. Thanks so much Ruby. ...

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