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:
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.
Instead of support for one another in the alopecia areata community, we’re confronted with this:
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!”
This was later posted on 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:
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.
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-