Do you want more money to be spent on... - Restless Legs Syn...

Restless Legs Syndrome

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Do you want more money to be spent on RLS research?

Daragh profile image
23 Replies

The European Commission is looking at health 'missions' it can target over the coming years. Our colleagues at the European Brain Council have been hugely active in advocating for a Brain Mission, which will include RLS. You can read this proposal here: braincouncil.eu/wp-content/...

A recent European Commission proposal failed to mention the brain or the impact of brain disorders on European society. As RLS is a brain disorder, we and our European RLS groups found this very disappointing.

However we still have a chance to influence this. We need to bring this oversight to the attention of the responsible people, both the scientific and patient communities involved in brain research. We need to ensure they do not ignore RLS.

So...

We are going to send emails, hopefully hundreds, if not thousands of emails, to draw attention to their oversight. We need your help. This is of great importance for the funding of brain research, and thus RLS research, in the coming four years.

We are asking you, as individuals, to send a copy of email below (adapting where appropriate) to Ms Annette Weber (annette.weber@bmbwf.gv.at).

Annette Weber is the spokesperson for Mr Heinz Faßmann, the Austrian Federal Minister for Education, Science and Research who will chair the forthcoming Competitiveness Council.

We need you to do this today. Just copy and paste the text below into an email, add your name and send it to Ms Annette Weber (annette.weber@bmbwf.gv.at). We cannot allow RLS or brain disorders to be ignored!

If you send an email, please could you indicate so below, so we have an idea of whether our campaign is working?

Thank you!

______________________________

Dear Mr. Faßmann,

I am writing to you today as I would like to draw your attention to an issue that is extremely urgent and relevant for patients diagnosed with brain disorders such as Parkinson’s disease, Multiple Sclerosis, Schizophrenia, Alzheimer’s disease, Dystonia, Restless Legs Syndrome, Epilepsy, Dementia and many more.

As a European citizen living with Restless Legs Syndrome, I am closely following developments that concern research funding. As such, I am aware that EU decision-makers are currently discussing the design of the next Framework Programme, entitled Horizon Europe, that will support research across the EU. Furthermore, I also learned that Horizon Europe will fund various R&I Missions that aim to address a number of pressing societal challenges.

To my dismay, I recently learned that the European Commission circulated proposed ideas on potential Missions, as a starting point for their development, amongst the national Science Ministries prior to the informal meeting of EU Research Ministers that was held on 15th October. When reading these, I could not find any further mentioning of the brain or the impact of brain disorders on European society.

I am profoundly disappointed and even shocked that the suggested examples of Missions do not address brain diseases since we, as patients, are well aware of the immense burden and human suffering caused by brain disorders. What is more, mental and neurological conditions could severely affect the sustainability of healthcare systems in Europe. One in three European citizens are likely to be affected by a brain disorder, the cost of which is estimated at €800 billion annually. It is therefore paramount that the EU Ministers that will meet on 29th-30th November take robust measures to effectively address this threat.

Against the above, I strongly urge you to make a call for adopting a Brain Mission and taking the well-being of our society into account during the upcoming negotiations on Horizon Europe. This would make a real difference to EU citizens and will provide me and other patients living with mental or neurological diseases with hope for cures and improved treatments.

With kind regards,

Written by
Daragh profile image
Daragh
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23 Replies
Daragh profile image
Daragh

Done, sent from my personal email address

Great job by the Chair, we depend on your excellence and appreciate your time and effort that you put into this on our behaves. Two emails sent from different email addresses!

Many thanks

P

I have two email accounts I use that can send emails plus one for each kid and the Mrs PLUS I'll twist a mate or twos arms as well.

Don't suppose there will be money left for a trip to the south of Spain for me? No OK, maybe next time!

JUST A WORD FOR THOSE COPING AND PASTING:

There is a typo on Syndrome its spelt Sydrome in first line paragraph two and WELLBEING is hyphenated and not the one word. Herr Faßmann might spot we are all using the one if the same typo's are present.

I have altered both of mine including German greetings in an attempt to butter him up, (failing that I will take a pound of butter and a knife and go speak with him in person :) ).

**EDIT**

Two emails sent to Herr Fabmann, (but with the funny B).

Kaarina profile image
KaarinaAdministrator in reply to

Hi raffs,

Thank you for heads up on the typos. I have now corrected them.

Vyna profile image
Vyna

I have sent mine today.

Thank you

Vyna

LotteM profile image
LotteM

Done.

I added the following phrases at the end of the 2nd paragraph:

"Given the facts that

(1) the cause of idiopathic RLS is still elusive,

(2) that almost all research on RLS is focused towards medicines, without properly understanding both the disease and the precise target and mode of action of the researched and prescribed medicines, and

(3) that this “invisible” disease is far more widespread than known and often has a large but hidden cost to healthcare and society at large (see: earls.eu/ebc-study),

I think and strongly advise that fundamental research into RLS, and more generally into diseases of the brain, should be high on the agenda of Horizon Europe."

Just sent a slightly personalised version of the letter from one email account and will follow raff's rascally example and use a few other addresses and personalise the email a little more.

in reply to involuntarydancer

It's like they say round these parts - "Vote early, and vote often." :)

Have added in LotteM's bit with the wife's email, (say nothing ;) )

rkatt profile image
rkatt

Sent! This is very important!

Patsy11011 profile image
Patsy11011

I have sent the email

Just sent.!

Jose651 profile image
Jose651

Done.

J 👍

Mum007 profile image
Mum007

I sent one. Thanks 👍

hausbauer profile image
hausbauer

Thank you for your work. Have just sent this email.

wantmysleep profile image
wantmysleep

Done, Sent 2 from 2 email addresses

Jelbea profile image
Jelbea

Glad to respond. Have just sent the email. Thanks for all your hard work.

Joolsg profile image
Joolsg

Only just seen this as I didn't visit the site last night. Email sent.

Joolsg profile image
Joolsg

Even though I'm late I've used my alias email account as well. They won't ignore emails just because they're a day late I'm sure.

Thanks so much for doing this- it's really appreciated.

TheDoDahMan profile image
TheDoDahMan

"...I could not find any further mentioning of the brain or the impact of brain disorders on European society." I was positively STUNNED by this oversight and am left with the conclusion that there's something political going on here. Am I just being paranoid?

Top34 profile image
Top34

I have also sent the letter having changed it in different way. It has gone from my two email addresses plus my husband's. Thank you for your help in driving this forward.

Noddedoffagain profile image
Noddedoffagain

Sorry only just seen this but have sent it.

Kerry10 profile image
Kerry10

Sent! Thank you for writing the email it was perfect.

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