It keeps happening. I keep getting inquiries that are pretty clearly indicative of how little attention is focused on a huge issue, PCOS, and how much ground inCYST has gained in the progress of trying to change that.
--Several months ago, a noted researcher with an interest in PCOS wrote and told me he was interested in being considered to join my"board". I had to tell him I didn't have one!
--A reporter recently asked me for a photo of our"institute". I had to tell her that right now we're just virtual.
--Twice in the last week, I've been asked where someone might donate money to support PCOS research.
The second inquiry, yesterday, was my inspirational moment. It came through one of our network members, who had inspired one of her support group members enough to start exercising. This woman decided she wanted to run her first 5K race to celebrate her commitment to wellness. And she wanted to use her race running as a means to raise money to donate to PCOS research.
Only everywhere she turned and tried to give money…she was turned away. Someone actually told her the cause wasn't"sexy enough" to be worth raising money for.
I was appalled. I've spent years at this point listening to women with PCOS share their stories, their frustration, their heartache, their desire to just know what they need to do. I've seen, time after time, the benefits of simple lifestyle changes. And I've also personally witnessed the battle these women have to fight to be taken seriously. They deserve better than to be told their illness is not sexy enough for researchers to care about.
My emotional response was probably fueled by the story WVEC reporter Lucy Bustamante recently put together, in which a physician treating PCOS admitted that women don't often get the right diagnosis because the tests it would take to do so"are just too expensive."
Over the summer, someone in the reproductive medicine department of Bristol Myers Squibb spent about 7 hours of time reading 378 pages of inCYST content. I remembered that during my conversation yesterday, and thought two things.
--Apparently these women are sexy enough to keep making medications for and taking their money for.
Even though these women are too expensive to thoughtfully treat, given the fact that they comprise 10%
of the female population, they are a great revenue source to target in research projects.
--If we got that much attention from the people doing the"real" research, it seems to me that on our own
inCYST has what it takes to be a rockin' research institute.: )
I decided, the moment I heard the words"not sexy enough", that it was time to stop turning all these inquiries away and start pulling together all of those resources to do something different.
So, thanks to the small but profound and genuine gesture of the exact kind of person inCYST was created for, a woman who simply wants answers, I'm going to start the procedure for pulling together a not-for-profit arm of inCYST, devoted to research. Only our research will be different in nature. We want to encourage the kind of research that has a hard time getting funded, because it does not involve drug research. We want to balance the message that is out there and add credibility to the message we want you all to hear. And we want to be sure the supplements you all spend money on…are actually worth spending money on.
I have a lot of work to do, but I'm willing to do it if you're willing to help make it happen. My first step is the paperwork, and because that involves an attorney's work, it will cost money. I do not have an avenue for collecting donations right now, but I am posting this announcement so that anyone who might be interested in making a donation in the future might be able to write me and let me know where to find them when we're ready to take the plunge. It's not really all that much to get started, about $1000, so I think it's entirely doable.
If you are interested, please send me an email at marika@google.com.
Remember, it was a small gesture that prompted me to act. A lot of small gestures, pooled together, can make a huge difference.
Let's get this research party started!