Thursday, September 29, 2011

But What About....?

I talk to a lot of people about RLS/WED; at support group meetings, discussion boards, blogs and just people I meet. It's amazing how much MIS-information there is out there about RLS/WED--as my friend says, "It fairly boggles the mind!" In any search for information, please make sure you have reputable sources.

But lots of "information" I hear is centered around the Foundation itself or the Board of Directors. Someone once told me that they would not donate to the Foundation because of all the millions of dollars we accept from pharamceutical companies. If that's whats holding you back then read this; many years ago the decision was made not to accept money from these companies, for very good reasons. That holds true today. The only money accepted from pharma companies are an occasional grant for hosting patient meetings.

So here's your chance. Ask those questions and I will answer them the to the best of my ability. Have a comment about how something is done? Let me know. Have constructive suggestions on what needs to be done? Send them on. We're all in this together, even when it feels like you are the only person in the world with RLS/WED. So start thinking: But what about...?

Moon and Stars

Wednesday, September 14, 2011

Tell Me About It

September is RLS Awareness month. September 23 is National RLS Awareness Day. Many of us who suffer with this terrible disorder will be holding special support group meetings, contacting the mayor to inact RLS Awareness Day, sending letters to the editor of the local newspaper or putting information out wherever possible. So who is? What are you doing to promote Awareness Week/Day? Tell me about it.

There are people out there who work tirelessly as support group leaders; not an easy job! Some people watch the internet and respond quickly and loudly to negative or misleading information. Many support each other on facebook or the RLS Discussion board. Some people are very generous with donations and some send what they can. What do you do in the fight against RLS? Tell me about it.

Many people are barely hanging on and getting through the day (and night) takes everything they have. Some people volunteer for clinical trials that just might help find new medications or get us closer to a cure. As sufferers, we come from all spectrums and walks of life. How do you get along? Tell me about it.

There are also many people who suffer with RLS who do nothing. The people I am talking about could do something but choose not to. They are often quick to complain about the lack of medications, qualified doctors, not enough research, education, support...but do nothing to help these come about. I could be wrong. If I am, tell me about it.

RLS Awareness month comes every year. Every year is another opportunity to bring awareness to people who suffer but maybe don't know what they suffer with. It brings an opportunity to help educate and support all of us; sufferers, doctors, family and friends, the media and the world. So why do we wait for someone else to do something? Who is ultimately responsible for our well-being? There are people out there who truly cannot do anything but hang on. I do what I can in this fight not only for me and my family but for them. If this blog made you uncomfortable, then look again at your situation and see what you can do to help. If you have comments about what I wrote, tell me about it.

**The statements and opinions here are solely my own and I take full responsibilty for them**

Moon and Stars