I want to chat to everyone about this group. I know I am going to ruffle feathers this time. But I rather be truthful to you guys. I have nothing against the group but the founder. I am going to tell you the reasons why I never want to support this group. First thing is that when I went on the group they were hostile to me. And the way they think its that alopecia is not normal it needs to be cured. That's fine to feel that way but would you tell that to your kids? And then the founder on several occasions had insulted people. Once on a facebook group he insulted a loved one of alopecian and questioned why he was on an alopecia group? Second in my own discussion on alopecia world. And even when I questioned about the trials.How sure is he that everyone would be cured? He doesn't know why it happens.So far its only him that it has worked.. Chances are since everyone is different that it might not work and if he stopx treatment his hair falls out. And you still have to pay for the trials. So I will never support this guy. I rather be bald for life and that's my feelings on it. And you guys need to be your judge and jury if it comes to groups like this one. Maybe you might be treated better then I was. But I still question that group's ability to get a cure and it has not gotten along with several awareness groups. If you feel that he will get cure then please be my guest and support the group. However in my own experience with this group. I don't need the amount of hostility I got. Not even for a potential cure. Worse part of it all when i said i wasn't going to support this group.One of the followers said she will delete me off facebook. I am more then my hair loss. And I don't really care if you don't have hair,an arm or leg. My reasons for not involving myself in cure research is because like alopecia is to you. Treatments will always be my weakness.But I will never stop anyone from taking treatment if it got their hair back. I want them to have the choice I never had. So now I rather spent my time helping people cope and feel good while there is no cure. I know I will fail and there will be people can't help.But at least they know someone thinks they are beautiful in your own right.And I am not going to stop you from supporting that group. Its your life. Don't let me stop you.
I went on their site but can't find anything about 'their trials' ones that you pay for or otherwise - what do you know about their trials? I agree there needs to be a demand for a cure but I can't help but wonder why if someone has 'the cure' - then why would they not share it - for a price or otherwise - especially one who himself suffered for years with this disease.
The man behind GAM grew his hair back in a very short period of time after having suffered AU for 19 years of his young adult lifea. He did this through a very specific nutritional regime..... however as Tan correctly stated, this has not been researched and tried on others in a controlled environment to date..... He wants to set up trials whereby he can do this. However many factors come into account.
Firstly, just because this worked for him does not mean it will work for someone else
Secondly, some peoples hair have grow back sporadically after not changing anything in thier lifestyle, diet etc
Thirdly, this all takes time and money and we need support.
I have spoken with 3 people INDEPENDANT of GAM who have grown thier hair back using food intolerance testing and a very strict diet. I believe nutrition is key to this disorder but we need to research this farther.
Unfortunately because Alopecia is a genetic condition it is very complex, the triggers of the condition are vast and not fully understood YET.
This is why we need to unite and push this concept forward.
GAM IS NOT TRYING TO SELL ANYTHING OR HIDE ANYTHING..... IT WANTS TO FUND FOR RESEARCH TO CURE ALOPECIA...... IT IS SIMPLE.
When the trials do start up Lilybell i shall let you know
I too have experienced hostility with the founder. and will never support any group that uses such tactics to try to bring in members. And its just not the founder that has approached me. I had one of their members inbox me on facebook, only to sling insults and hostility when I said that I wish not to be part of their "mission" She messaged me saying anything from calling me pathetic and weak. and other things that cant be mentioned in a public place. The one thing that someone with alopecia isnt is weak!!! I would question their "cure" aswell. The founder is using a diet change mostly and the fact it only cured him so far??? As any one of us knows alopecia is unpredictable. We will get hair growth but then it can fall out just as easily. I myself had regrowth for almost 10 years. (while still getting small patches)
GAM will never be welcomed to my life.
Global Alopecia Mission has a very simple concept behind it. Global Alopecia Mission IS NOT a support group, for this there are already many set up such as this amazing site and Alopecia UK. This enables people to come together and speak with others who have this condition, to not feel alone, to help each other and talk each other through everyday problems they may encounter living with Alopecia. They are brilliant for that.
Global Alopecia Mission is simple, they have been set up since May 2011 and only recently have been registered as a charity, their mission is to fundraise across the globe for INDEPENDANT RESEARCH into Alopecia to find a potential CURE for Alopecia.
I have had Alopecia Universalis for 8 years, AA for another 2, in this time the research done has been negligible, one piece of substantial research was finding a link between Celiacs Disease and Diabetes Type I. This is not good enough.
Global Alopecia Mission is recruiting Volunteer scientists who wish to get involved in the project to push research forward.
The Director of Health is Maria Gomes-Solecki.
I have spoken with Maria on many occassions and her Passion, drive and scientific ways are exactly what we need as our voice behind research.
"Maria Gomes-Solecki, of the UTHSC Department of Microbiology, Immunology and Biochemistry, has enthusiatically accepted the challenge of development, coordination and oversight of Global Alopecia Mission health and sciences activities. In particular, Maria will focus on GAM research, trial activities, scientific commentary, health and science information, and building health and science resources. She has vast experience is the areas of immunopathogenesis, immunodiagnostics and immundiagonostic systems.
Maria, who has been personally affected by her daughter's alopecia, firmly believes that Alopecia is tremendously underserved by the scientific research community. She feels that large increases in public attention and research funding are necessary if genuine progress against the disease is to be made. In keeping with the GAM vision, she agrees that a well-informed, vocal, and active alopecia community can bring about these changes.
Please welcome Maria to the GAM team and show your support as she helps Global Alopecia Mission take a crucial step forward to solidify its role as the dominant advocate of alopecia research leading to effective treatment and a cure." (Courtesy of GAM website)
Maria has this pretty shocking information to spell out the state the current research into Alopecia is....
"Alopecia Areata is a common disease affecting roughly 1.7% of the population in the US (5,100,000 people - 5.1 Million) per year. This disease received a total of 5 grants in research funding last year (2010) from the National Institute of Health. This is 1 research grant per million of people affected. Research funding going into a very rare disease such as Lyme disease affecting less than 0.0001% of the population in the US (30,000 people per year) amounted to 150 grants. This translates into 1 research grant per 200 people afflicted by Lyme disease.
We need to ask ourselves Why?
Neither disease causes death of the patient, yet Alopecia Areata patients endure the wrath of a disease that onsets at random and for which no cause or treatments have been identified. A disease for which patients can only feel hopeless and resort to magic medicine to fulfill their need for a treatment. Luckily for patients afflicted with Lyme disease they can quickly avail of proper uptake of antibiotics to be treated and cured in most cases.
The reason why there is no more research going into Alopecia Areata is the lack of Outraged Clamoring Voices out there to bring this issue to public." (Courtesy of the GAM website)
This is what GAM wants to change. I do not see the harm in this.
I AM CERTAIN THAT ALL SOCIAL NETWORKING SITES SUCH AS ALOPECIA WORLD AND ALOPECIA UK WILL BE BEHIND GAM ON THIS...... SINCE AT THE END OF THE DAY WE ARE ALL BATTING FOR THE SAME SIDE.
WE ALL WANT ALOPECIA TO BE CURED.
GAM CAN OFFER AN AREA WHICH IS 100% DEVOTED TO FINDING A CURE.
I AM ASKING YOU TO PLEASE JOIN ME AND OTHERS IN GLOBAL ALOPECIA MISSION IN FIGHTING FOR INDEPENDANT RESEARCH INTO ALOPECIA.
TO OPEN UP A FUNDING POT SPECIFICALLY FOR ALOPECIA RESEARCH WHEREBY WE CAN SEE EXACTLY WHERE OUR MONEY BEING RAISED IS GOING. TO BEGIN FUNDRAISING AS A CHARITY FOR INDEPENDANT RESEARCH INTO ALOPECIA.
LETS SEE EXACTLY WHERE OUR MONEY IS GOING. LETS GET THOSE GRANT NUMBERS UP BY UNITING AND CREATING A VOICE THAT UP UNTIL NOW HAS BEEN ALL TOO QUIET.
LETS PUSH THIS AWFUL AUTO IMMUNE DISEASE FOR WHAT IT REALLY IS, NOT SOME SUPERFICIAL COSMETIC PROBLEM. WE NEED TO MAKE OTHERS UNDERSTAND THE SIGNIFICANCE OF THIS CONDITION AT A DEEPER LEVEL.
I FOR ONE AM BEHIND GAM 100%.
I cant wait to begin fundraising and see our money pot fill up and watch research progress until we find a cure. I have suffered this condition from 20 to 30 years of age...... i want to look back when i am 40 and see substantially more research being done and ULTIMATELY HAVE MY HAIR BACK BECAUSE WE FOUND A CURE.
So please..... SUPPORT GAM, click LIKE, follow our progress and join in....... We can do it together!
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