Monday, May 16, 2011

Mythbuster #1

**The following information was provided by the RLS Foundation but the comments are purely my own!***


I hear and read these questions constantly. People plead, discuss, and many times complain on the Foundation discussion board, facebook, other social media and to each other that the Foundation is not doing enough. I understand the misery behind these questions. I, too, would love to know there are other FDA approved medications available. I will celebrate long and loud when a cure is found. However, I will NOT ask why the Foundation isn't doing something. Here's the scoop--

Medical research funding comes mainly from two sources; corporations and the government. In many cases, corporations are usually motivated by profit. The government funds research either through itself or by awarding grants. Researchers look for grants that have a large appeal and that will pay for most (if not all) their salaries. They also need to cover costs for equipment and for people to help with the research. So they go (understandably) where the money is--which is seldom in little-known disorders such as RLS.

In 1997, the Scientific Advisory Board (SAB) of the RLS Foundation was organized. The first research grant was to fund a postdoctoral fellow at the National Health Institute. Since that time, there have been 28 research grants funded for a total of $1.3 million. And, two of the three groups announcing genetic discoveries in 2008 were funded by....guess who? The Restless Legs Syndrome Foundation. That's right, the same foundation often accused of not doing anything.

The RLSF research grant program is advertised via the website and generally attracts 20 letters of intent each December. Those letters are scored by the SAB and the top applicants are invited to submit a full application. The applications are then rigorously reviewed and scored; 1-2 grants are funded each year. Here's the kicker--RESEARCH PROGRAM DOLLARS COME FROM INDIVIDUAL CONTRIBUTIONS!!! These contributions are restricted by the donor for research only. This is the ONLY WAY research is funded, through contributions from all of US.

So, to paraphrase a famous quote--"Don't ask what the Foundation can do for you, ask what YOU can do for THE FOUNDATION!!" Now, do I have enough money to fund a research grant? Of course not. But I might have $5 to send and restrict for research use only. If 1,000 people sent $5 each.....

If you are interested in viewing funded grants, go to the RLS website, click on the Medical and Scientific tab, then on the Research Grant Program tab.


RlsBecat/Lynne said...

I have to agree that the money is not flowing, thus there is a limit to what all the Foundation can do.
I have no doubt that is Big business really knew how many people they employ, that had sleep issues, maybe even EKD/RLS, they would likely step up.....hmmmph! maybe not, it's hard to get anyone to part with real donations.
However, there is tons each of us can do. Educate those around you or find someone willing to do so for you. There are many of us willing and ready to educate, get us in the door.
We talk about this yrs. ago on the RLSF discussion board, the name was Silver Linings" the change from your pockets, bottom of the purse, the car, etc.; after a month or two, maybe more, you'd be amazed how much it builds up. Enough to send a small donation.
It's a small idea that could bring $5 a person in no time. We can tell the foundation how to use our donations, but they usually know where they need it most. However, you have that choice.
It's true, so many in the medical community needs a better education about EKD, know that the pharma companies HAVE to educate about the target illness and it's populations, it's not all about a buck. They do spend time teaching about us. However, we have the choice to help ourselves.
We know how to best help each other already, maybe this time we help out with a small donation. Taking this into our own hands will give us some pride in helping ourselves.
We have done it before and can Always do it again.

Kathy said...

You are absolutely right about businesses not understanding how this affects employees and in turn, them. If we could get that message across, it would work wonders. By their donations, they would be saving money in the long run.

The Silver Lining project you started several years ago is still a good one. Maybe we need to put that on facebook for the people who will never look here. Want to try it again?

Your last paragraph says it all and I thank you for your heart in all of this.

Moon and Stars

bethf said...

I like donating by having a small amount charged to my credit card every month. I barely notice it when it's done that way, and even small amounts help!

I'm torn on whether to restrict my donations to reaserch or let the Foundation decide whether research or awareness is more important at the moment. I tend to want to focus on research - that's where the answers will come from, after all - but how will we ever get major funders to contribute if we don't spend on awareness?

Welcome! said...

You are so right, Beth. But there are some people who want to know that the money they send goes to a specific area. Awareness is so important too as is education. I think the Foundation does a great job of getting what money comes in to the place it is most needed and keeps it balanced as much as possible. I just appreciate the fact that we can specify if we want.

Donna McLellan said...

Lynne's idea is a good one. With the economy we live in, at least in my world, I cannot give any money off my small disability check, but I own and manage several online support groups. Research is VERY importane, BUT if we do not work on the awareness aspect, then there are less contributions. I say awareness comes first, then understanding, then the contributions. My contribution is myself. My groups and I are pushing for awareness, because that is where we feel the most helpful, as far as helping new members. I get new members almost every day from all over the world. Countries like India, for example, are pretty much clueless in the medical community when it comes to RLS, for the most part. I have several members just screaming for help there, and they are not getting help at all. It is like 1997 there, (so little awareness and knowledge), that it takes me back when I got my first computer and had no idea what RLS was. I was sooooo happy to find the Foundation, Virginia Wilson's Sleep Thief book, and the support group that I now own and moderate. All 3 of them saved my life literally. BUT< I can look at a new member's "intro" email, read their comments and pleas for help on Facebook, and then I look back at old posts from my groups, and it is extremely sad that some of the posts from 1997 are almost word for word the same as 2011. That is when I get frustrated about the awareness issue. In some ways we have come so far, and in other ways we have not. At least I feel better able to cope and help now. I remember back in 1998, I believe when we found the first article about RLS in the SAT Evening Post. We, as a group, were sooo ecstatic to just see anything in print about RLS! Now, you run into it all over the internet, but there are just as many "lost lambs" as there were a decade ago. If I do ever have anything to send for a contribution, it will be designated for AWARENESS, like PSA's. Awareness and coping is what I do 7 days a week, pretty much 24/7. And, doctors need better training in sleep disorders period. Unless it is their specialty, they only spend a few hrs of time in med school on sleep disorders and something NEEDS to be done about that! We need to start at the beginning. The drug ads had their good aspects and bad aspects, but at least they brought some more awareness, (plus the jokes) and did get some people to the doctor that previously did not ever want to even bring RLS up because they had no idea what was bugging their legs and sleep. But, the drug ads for another post and time. :o) No matter what, NEVER stop raising awareness. It is the key to finding a cure, getting donations, and most importantly maybe save a suicidal soul one in a while. RLS is so insidious, and the effects on life, jobs, relationships are overwhelming. To me support is the thing we have to concentrate on, because I get letters every week that say "I thought I was the only one!" My largest group has over 2200 members from 16 countries and is a great support network. It is the first RLS group listed in the yahoo health groups under RLS and is in the TOP 2 % of ALL support groups, RLS or not. So, that is my contribution.

Welcome! said...

Donna, believe it or not we are making strides in the educational field for doctors! We have been working very hard to get it introduced in medical books and classrooms. You would not believe all that entails! You can't just demand, you have to start here, go to here, then here.....But we are prevailing!

As for the pharma ads that used to run, the pharma companies don't do that anymore. Except for Horizant, the other two FDA approved meds (Mirapex and Requip) are now available in generic form. So they would get no return on their ads.

You are right, we have come a long way. We still have a long way to go. We have made it this far because we DO have the Foundation to rely on as well as leaders such as yourself. The Foundation is there for people all over the world but we don't have the man power or funds to do much more than what is being done. That's why people like you are so important. Awareness and education go hand in hand. We make people aware of what they have and educate them to cope with it.

Anonymous said...

I've had RLS since 1980, before there was a name for it. It was maddening describing what I felt. The only thing that works for me are pain killers. Not that it hurts but the nerves that trigger the sensation seem to turn off with pain killers. I can't take aspirin or ibuprofin but when I did out of desperation they worked. Normally I have a prescription for hydrocodone that I take about an hour before I go to bed. If I get it at work or driving...that's when my arms and hands are also affected I have to get up and walk around.