I’ve been tossing around this question lately: “Is there a “right” or a “wrong” way to advocate for something you believe in? Something you support and are passionate about?
At one of my recent Girls on the Run classes, the topic was about community. My little 8-10-year-olds were able to come to the conclusion that all communities; big one’s, small one’s, adult one’s and kid one’s are far more successful when the members of the community find a common ground and begin to work together.
How beautiful is that? How beautiful are these little girls?
So, as usual, they got me thinking. I have come across a lot of arguments in the alopecia areata community since I first became a part of it several years ago.
Here’s where the main argument stems from: do we focus enough on FINDING a cure? From there, an argument begins about who is and who is not focusing on research and who is and is not putting enough focus on support.
Here’s a bit of what I have been seeing:
Robert Swierski is a beautiful person who started the Global Alopecia Mission (GAM). It is so evident that he wants what is right for all those impacted by alopecia areata physically and emotionally. On the GAM site, it is stated that, “GAM is the only nonprofit organization that is exclusively devoted to research leading to a treatment and a cure for Alopecia Areata.” That is AWESOME. I am so, so, SO glad that GAM exists and that we, in the alopecia areata community, have people like those at GAM who are willing to fight to find a cure.
There’s only ONE issue I have…
In their mission to push for a cure and push for research, the main people over at GAM attack many of the organizations and individuals that push for support for those with alopecia areata.
GAM has attacked the National Alopecia Areata Foundation (NAAF) on several occasions by stating that they do not do enough to push toward research and a cure. On the NAAF site, it states that the NAAF, “supports research to find a cure or acceptable treatment for alopecia areata, supports those with the disease, and educates the public about alopecia areata.”
Covering all the bases?
But,rather than acknowledge these efforts as a purely different approach in the “fight” for a cure, GAM posts photos like this to their Facebook page and references NAAF:
From the GAM Facebook page
I just don’t see where were going with this.
Two different organizations, two different purposes. Period.
Kayla Martell is a well-known face in the alopecia areata community. She has a voice that can be heard by millions and, in my opinion, uses that voice to advocate for those with alopecia areata to the best of her ability.
No?
Instead of support for one another in the alopecia areata community, we’re confronted with this:
From the GAM Facebook page
And it’s not just directed at Kayla or NAAF, it’s directed to all of those who push support. Well, that’s just not fair. At all.
Georgia Van Cuylenburg, a wonderful actress and voice for alopecia areata has also come under attack lately. Van Cuylenburg created the AWESOME documentary “Baby Let Your Hair Hang Down”. She’s joyful and brings so much hope to those with alopecia areata. In a recent segment with 20/20, she states that alopecia areata has given her strength and has helped her realize who she is supposed to be (Read “Why I wouldn’t Change it” for my view on that). As the segment ends, Van Cuylenburg says, “I love my alopecia!”
From the 20/20 Segment
This was later posted on the GAM Facebook page:
From the GAM Facebook page
How on EARTH did the push for a cure set back 10 years because of this inspirational, beautiful segment. It was honest, raw and real. What more do we want? She showed HER story. And that’s just it. We each have a story. A story that is so totally unlike the story that anyone else has.
What if we could all work together as one big, great, AWESOME community? What type of change could we inflict? We talk about pushing for understanding of alopecia areata, but it’s not even modeled in our group. We post messages of combat such as these:
From the GAM Facebook page
Instead of ones of inspiration. Such as the stories of each of these beautiful people:
- Joanna Roswell
- Georgia Van Cuylenburg
- Andrew Durnant and Max Brown
- The Bratz Dolls!
- Gail Porter
- Jenna Cooley and family
- Molly’s Story
- Maria Mahnken
There’s SO many more inspiring alopecians– but, these are a few you can tune into.
The truth is, there’s just no WRONG way to spread awareness of this disease. There’s no wrong way to advocate for something we believe in. We all want to find a cure, yes. But, in the meantime, let’s spread a little JOY! There’s nothing to be joyful about when it comes to this disease, you say? I could not disagree more.
Joanna Roswell winning the gold! from telegraph.co.uk
A Locks of Love event held by the Cooley family.
Runners at the 2011 Tortoise and Hair Pittsburgh race
Alopecia areata awareness at the Pirates game (2011)
One of the participants at Tortoise and Hair Pittsburgh 2011
There’s a lot of joy and a lot of progress to be made– as my sweet girls at Girls on the Run say, “It all works better when we work together!”
Peace and Love-
A
Beautiful, beautiful, beautiful, AWESOME post! I am so JOYFUL for you, and the awareness and love you spread every day!
This is a great article and such a fantastic point of view – one that I embrace with all my heart. I choose not to speak out against the negativity because i understand that we are all feeling frustration and hurt in our own way…but thank you for putting this so calmly and beautifully. And thank you for the kind words – you are an inspiration!! oxo
Georgia: Thank you so much for reading and for your wonderful words in reply. I agree completely that we each have our own way of expressing our frustration with this disease. Hopefully, in time, we will all find a common ground and will work together to push for what’s important- support, research and a CURE! xo
Point well made. : )
As a 28 yr “alopecian” who has only stepped into community in the last year, I am asking questions myself. Is it true that change is never easy? And when we look around at what other communities are doing – books like Crazy, Sexy Diet from a cancer survivor – I wonder what it is that we are accepting . . . the symptom of hair loss and what it shows us of personal and social adversity, or the disease alopecia areata that is impacting our bodies every day, even if some of us don’t “feel” sick . . .
How can we look “critically” at ourselves – our community – well beyond advocating for research, awareness, and support? How can we make our community even more than what it is, which may involve pushing existing boundaries?
I would suggest that GAM is trying to do something critical, in “rebalancing” what AA research means. So the teeter totter? What I see is the desire to stop “accepting” alopecia and “fight” – push – harder, more critically, to understand this disease, which is the same thing other communities are doing in this connected day and age.
Perhaps not unlike how we take a step back and let a newly diagnosed alopecian release their anger, we can do the same with GAM and let it find its place as it offers something to the community.
Let’s keep talking! I know I will. : )
Jana: These are all wonderful questions to consider! It’s interesting that you brought up Crazy, Sexy Diet. For me, that book was something I looked to when I asked the questions: “Can we change this disease by eating a certain way?” Hey, if you can cure cancer by eating right, can you make your hair regrow?!
I definitely agree that we should not just sit back and “accept” having alopecia areata. We mush push for answers. I just believe that we all “push” in our own way. Some of us push by supporting others in our community that have the disease. Others push by calling and writing to Congress to ask for funding for research. Still others push by proudly stepping out each day with their bald head and letting others know what disease made them lose their hair. It’s such a personal journey.
I think Georgia made a wonderful point in her comment above. Each of us is dealing with our own anger and frustration when it comes to this disease. Each of us has our own way of expressing that. Hopefully we can all meet on a common ground of advocacy at some point.
Thanks so much for reading and for your input. Let’s definitely keep chatting!
ox
Bald Girls Do Lunch, our award-winning nonprofit created specifically for women with alopecia areata is planning summer meet-ups for Ohio and western PA at the end of June/early July. I hope you’ll join our contact list at baldgirlsdolunch.org and get involved. Let’s Do Lunch, or coffee or dinner in Pittsburgh!
Thea Chassin, founder and president
Bald Girls Do Lunch Inc
Today’s most vibrant network for today’s women with alopecia areata.
800.578.5332
info@baldgirlsdolunch.org
Thea: That sounds absolutely wonderful! I have been interested in Bald Girls Do Lunch for quite some time. I will join your contact list now and would absolutely LOVE to meet up when you are in Pittsburgh!
Keep in touch and we will make a plan!
ox Amanda
“Robert Swierski is a beautiful person who started the Global Alopecia Mission (GAM).?”
NAAF and CAP walk the walk, GAM talks the talk. It’s as simple as that.
By the way, they are not 100% devoted to a cure. They say we don’t need more support but that’s what their website and Facebook page is all about! They also started another page called GAM KiDz which is still more so called support and sounds very similar to the Children’s Alopecia Project and their CAP Kids?
I guess it comes down to your need. I will stick to NAAF when research, awareness and lobbying is needed. I will stick with CAP when helping self-esteem, support and awareness for kids and their families. GAM, well good luck I guess.
Jeff Woytovich, Founder
Children’s Alopecia Project, Inc.
Post Office Box 6036
Wyomissing, PA 19610
Tax Exempt 501(c) 3 Non-Profit since Aug 2004
http://www.ChildrensAlopeciaProject.org
Facebook.com/ChildensAlopeciaProject
Jeff: Thank you so much for reading. I just love CAP and all that it has to offer for children and families dealing with AA.
I do think that Robert Swierski is doing what he believes is right for our community. I think that, perhaps, he is just letting his anger and frustration get the best of him..?
I think that it is nearly impossible to give absolutely no support to the people involved in your community and that, eventually, GAM may realize that there needs to be some sort of balance in order to give those who follow them and count on them the help that they need.
I am devoted to NAAF and to their efforts and would love to be involved in CAP. If you have a need for people who will act as support or educators for kids, I would love to be a part of it.
Stay in touch.
-Amanda
I re-read my post and looks a little more harsh then when I wrote it. I guess what I mean to say was when GAM came on the scene they spoke of cures and trails they were developing and it just seemed wrong since so many opportunist are out there already touting cures. So they seem to start off on the wrong foot and then they started to be unapologetic for their tone and it was at that point where people got turned off and tuned out a bit I admit I did.
No one knows what they are doing? Where the money is going, what do they consider research? Why not advocate to NAAF for more devoted research instead of doing it on their own? There are more but I’m sure you all have your own questions too.
Listen, NAAF has snubbed CAP and any other NP devoted to Alopecia, I understand why, Money. CAP is my passion and I don’t draw a paycheck so it’s different. Our CAP Kids will grow and if they need continued support NAAF is a place to grow into. I get it now. I am sure they thought I was arrogant when I wanted more devoted specifically to kids and self-esteem so when I suggested it they probably thought like we think of GAM.
When I see more transparency with GAM and see them doing tangible things and have a board of directors in place running the organization and not one person I will feel more comfortable.
Until then I will hope for the best because I have always said we are stronger together then we are apart and we all can be devoted to separate parts and still compliment each other.
Sorry if my tone seemed more aggressive then I wanted it to be and yes! CAP would love to have you become involved! One of our major benefactors is NuGo Nutrtion based in Pittsburgh and they just raised close to $3000 running the Pittsburgh Marathon for us!! We love Nugo!
If anyone would like to discuss anything you may have a question about please call my cell phone at 610-741-5552 anytime. Leave a message if I don’t answer and I promise to return your call.
Take care everyone,
Jeff Woytovich
Hi Jeff! I apologize that it took me a bit to respond to this! I didn’t take offense to your original comment. I think that we all just have such passion for what we are doing and sometimes, as you described, that passion can come off as aggression. I think that the individuality of each of the organizations is important. Like you said, NAAF is a great place for CAP kids to grow into. Yet, I also think it is important to find a common ground so we have a stronger/more powerful group pushing for advocacy. I think we are headed down the right path and, hopefully, these open conversations are leading us that way.
NuGo is a GREAT company. I didn’t realize they were such a big supporter of CAP. Keep me in the loop about opportunities this way that I could be involved in. I would also be willing to do some work from here on a social media base– whatever needed really. I will follow up in a bit if I do not hear from you. You can email any time at amandakshannon@yahoo.com or tortoisehairpgh@yahoo.com
Perhaps some of you can make it to Pittsburgh for the Tortoise and Hair race! I know it supports NAAF, but it really is a great event. I would love to see you all there!
Let’s stay in touch!
That’s terrible!!! Honestly I don’t see what they are trying to achieve by attacking people like that. They should be ashamed of themselves.
I didn’t even know about this. Thank you for drawing my attention to it.
@Laura: Hello, beautiful! I think we, as a larger community, are headed in the right direction… http://globalalopeciamission.org/we-hear-you/
ox
Amanda, I’d like to thank you for your article and let you know your concerns are being heard. I have done my best to give you and everyone else a proper response on the GAM website. We Hear You
If you have any questions about GAM, feel free to email me.
@GAM: I have so enjoyed the last few weeks of talking with you and pushing ideas back and forth. As I said this morning, I am so eager to see how this community unfolds.