WHAT ORGANIZATIONS ARE DOING RESEARCH INTO RLS to find the cure. i want to donate some money to help funding

[ge7521]

title says all

[GuillaumeL]

Here : rls.org/

[Kayakcarole]

Contributions can be sent to

[e-mail] ATTN: NightWalkers or mailed to

Restless Legs Syndrome Foundation

3006 Bee Caves Road

Suite D206

Austin, TX 78746

I am very pleased with my membership. I receive the quarterly publication Night Walkers and have access to free patient webinars.

Yearly Membership costs for US/Canada is $35 and $45 for international. To sign up go to RLS.org/become-a-member

If you don’t want to become a member at this time but would like to receive the free monthly e- newsletter “eFriends”, you can enter your email address at RLS.org/subscribe

[Shumbah]

Hi Ge

Just hold tight !

I am currently working on something with Professor Winkleman

He is planing a study on opioids and augmentation.I really can’t say to much , he has organised a think tank of international leaders in RLS in discussions.

The last study on Buprenorphine was stopped due to funding.

I have details on what funds we need to raise for this study.

I will be having a phone conversation with Professor Winkleman during the next week regarding the study and the funding.

When I have the correct information signed off I will be posting on HealthUnlocked, and other RLS platforms.

1 in 3500 births have muscular dystrophy and everybody knows about it because of the ice bucket challenge.

I read the other day the RLS statistics are now heading towards 10 percent of people suffer with RLS

So if you that would be 350 out of 3500 peeps and know one really knows about RLS not even GPS or augmentation , the suicide rate let alone how severe it can be.

So my plan is to absolutely blow the lid off this disease on an global scale and I will be asking this group in particular for support help and ideas and to be pushing, sharing and promoting as hard as we can make a change instead of suffering in silence.

We are the victims of the opioid war !

[ge7521 in reply to Shumbah]

Thank you for what you are doing! I'm looking forward for your post!

[Shumbah]

Ps I should say it won’t be a cure however hopefully the exposure about this disease may help.

I have a great quality of life now on buprenorphine my heart breaks for those still being tortured.

[Hidden]

The Restless Legs Syndrome Foundation is probably the best bang for your buck.

I also donate through Amazon's Smiles Program. You sign up and them go to smiles.amazon.com every time you use Amazon. You can specify the charity of your choice. I think they donate 0.5% of the sales price of eligible things you buy which for us is almost everything.

Got a note from them yesterday that with my purchases over the last few months, they donated almost $14.00 to the RLS foundation in my name. May not seem like much but it adds up with more and more people participating in the program. It is a painless way to donate, especially with what I am ordering from Amazon since the pandemic began.. Check with Amazon to see how it is done in your locale.

[ge7521 in reply to Hidden]

yes i will do that thanks

[Joolsg]

Only the US at the moment. No research at all on causes/treatment/augmentation/ opioids in the UK. It’s appalling!!!!

I spoke to the campaigns manager at the MS Society to get some help on how I can get the Association of British Neurologists to educate their members on this disease and she’ll be sending me info soon.

She said a starting point will be a template letter and then to try to get as many members of RLS UK as possible to send it at the same time to the ABN and the Association for GPs.

Unless and until we get a campaign going and funding- we will remain forgotten & suffering in the shadows.

Brilliant that Shumbah is working on something.

The US rls.org is funding quite a few treatment research projects which is why I am a member. The annual prescription goes towards research. They’re paying for Dr Winkleman’s opioid study.

[ge7521 in reply to Joolsg]

yes i have donated to the US RLS org. that really annoys me that the uk aren't doing research 😡 so what are the next steps we can do?

[Joolsg in reply to ge7521]

Active campaigning. I have just started the process by contacting the MS Society ( I also have MS). They’ve been helpful and have suggested an official letter to the ABN, NICE & the GP association- preferably backed by RLS UK but they suggest we agree a template letter and then get as many members of this website to send it at the same time.

They are also sending me on a funding ‘zoom’ meeting to see what funds are available.

It’s going to be a long haul plan. The US organisation took quite a while to get to the stage they’re at now and they did it by charging $35 for membership. They have more members than us.

I intend to keep pushing and finding contacts in media and the medical profession who will help us move forward.

Particularly with over prescription of dopamine agonists and total lack of knowledge amongst doctors and neurologists.

We have to tread lightly because the medical profession can get very antsy about patients knowing more than them and making suggestions but enough is enough!

We all have stories of appalling medical negligence caused by complete ignorance about RLS!!

Onwards and upwards.