Jonathan Edwards
Senior Member (Voting Rights)
With luck, collaboration between S4ME and WE&ME will be just the thing to change some of these points. The fact that WE & ME has wanted to set up this link must surely be encouraging.
Austria: WE&ME Foundation (formerly TEMPI-Stiftung, TEMPI-Foundation)
With luck, collaboration between S4ME and WE&ME will be just the thing to change some of these points. The fact that WE & ME has wanted to set up this link must surely be encouraging.
"Today’s WE&ME press conference for the petition supporting the PAIS Action Plan for ME/CFS, Long Covid and related post-infectious illnesses (by oeg_mecfs) brought together patients, experts, advocates, and four former Austrian health ministers, Rudolf Anschober, Andrea Kdolsky, Johannes Rauch, and Maria Rauch-Kallat, all calling for its implementation.I couldn’t be more proud of my beautiful sister-in-law Caroline who organized and moderated the event while working full-time, raising two children, and supporting a family affected by this illness.Thank you, Caroline, and everyone else for helping ensure that patients are heard and for fighting for the care, research, and support this community urgently needs."
National news in Austria today.
Utsikt
Senior Member (Voting Rights)
I’m envious. In 2021 in Norway, the then new health minister Kjerkol said she’s not going to be a covid-minister. It hasn’t been any better with the later ones.
ahimsa
Senior Member (Voting Rights)
Here's the news coverage from the WE&ME website:
www.weandmecfs.org
ME/CFS in Austria: Four former health ministers support a petition calling for the concerns of those affected to be addressed in the national PAIS action plan
The support of four former health ministers underscores the importance of the petition regarding the PAIS Action Plan for ME/CFS in Austria.
www.weandmecfs.org
Link to a translation of the article:
www-sn-at.translate.goog
It's a nice article that makes clear the huge contribution one family is making to ME/CFS research funding.
Excerpt:
New ME/CFS funding from private funds from 2027
The WE&ME Foundation of the Ströck family has launched a new call for research on the multisystem disease ME/CFS. In addition to ongoing projects, around two million euros in new funding will be made available in total. The research call is coordinated by the Vienna Science, Research and Technology Fund (WWTF). Several biomedical projects are to be funded, WWTF program manager Benjamin Missbach told the APA.
The funding call is carried out by the WWTF on behalf of the Foundation and is intended for several international projects. In a first round, six to seven smaller projects are financed. These are to run for up to two years from the beginning of 2027, about one million euros will be available for this. For the best of them, further financing with a higher budget totalling about one million euros is planned. In addition, for the next four years, two young researchers or Researchers were awarded an award for special achievements in the field of ME/CFS, each in the amount of around 5,000 euros.
International Expert Jury
The application for the purely privately financed research funding through donations is already possible, the funds are to be granted this year. The selection will be made through an international jury of experts, led by molecular biologist and ME/CFS specialist Mauren Hanson from Cornell University in New York.
Also represented on the board are the post-Covid expert and professor for rehabilitation at the Icahn School of Medicine (Mount Sinai/New York) David Putrino, the geneticist Chris Ponting from the University of Edinburgh and the immunologist Michal Tal from the Massachusetts Institute of Technology (USA).
Ströck: Patient participation decisive
The WE&ME Foundation particularly emphasises that the jury is also staffed with three patient representatives (plus two substitute members). A funding structure is needed, "in which the voices of those affected are not only heard, but institutionally supported," emphasised Christoph Ströck from the WE&ME Foundation, who himself is seriously ill with ME/CFS, in a written statement to the APA. "We have therefore conceived the WE&ME Call from the beginning in such a way that the patient's view is structurally engrained. Our cooperation partner Science for ME - the most important international ME/CFS patient forum - has helped to shape the call from the beginning and is part of the international jury. This is unusual in research funding, but it has to be the same with ME/CFS."
"Patients are critical, detail-oriented and have high expectations," says Ströck. "No one has stronger incentives to choose the best research than those affected themselves. If patients also have expertise in relevant specialist areas, this is a particularly strong basis for excellent funding decisions." Their comments are usually "precise and lead to better research results in the end".
Another WE&ME promotion award before launch
In July, it will also be announced which project will receive the funding prize of 450,000 euros, also financed by the WE&ME Foundation and awarded together with the Austrian Science Fund FWF.
........ more at the link
Neue ME/CFS-Förderung aus privaten Mitteln ab 2027
Die WE&ME-Stiftung der Familie Ströck hat einen neuen Forschungsaufruf zur Multisystemerkrankung ME/CFS gestartet. Insgesamt werden, neben schon laufenden Projekten, rund zwei Millionen Euro an neuen Fördermitteln bereitgestellt. Koordiniert wird der Forschungscall vom Wiener Wissenschafts-...
It's a nice article that makes clear the huge contribution one family is making to ME/CFS research funding.
Excerpt:
New ME/CFS funding from private funds from 2027
The WE&ME Foundation of the Ströck family has launched a new call for research on the multisystem disease ME/CFS. In addition to ongoing projects, around two million euros in new funding will be made available in total. The research call is coordinated by the Vienna Science, Research and Technology Fund (WWTF). Several biomedical projects are to be funded, WWTF program manager Benjamin Missbach told the APA.
The funding call is carried out by the WWTF on behalf of the Foundation and is intended for several international projects. In a first round, six to seven smaller projects are financed. These are to run for up to two years from the beginning of 2027, about one million euros will be available for this. For the best of them, further financing with a higher budget totalling about one million euros is planned. In addition, for the next four years, two young researchers or Researchers were awarded an award for special achievements in the field of ME/CFS, each in the amount of around 5,000 euros.
International Expert Jury
The application for the purely privately financed research funding through donations is already possible, the funds are to be granted this year. The selection will be made through an international jury of experts, led by molecular biologist and ME/CFS specialist Mauren Hanson from Cornell University in New York.
Also represented on the board are the post-Covid expert and professor for rehabilitation at the Icahn School of Medicine (Mount Sinai/New York) David Putrino, the geneticist Chris Ponting from the University of Edinburgh and the immunologist Michal Tal from the Massachusetts Institute of Technology (USA).
Ströck: Patient participation decisive
The WE&ME Foundation particularly emphasises that the jury is also staffed with three patient representatives (plus two substitute members). A funding structure is needed, "in which the voices of those affected are not only heard, but institutionally supported," emphasised Christoph Ströck from the WE&ME Foundation, who himself is seriously ill with ME/CFS, in a written statement to the APA. "We have therefore conceived the WE&ME Call from the beginning in such a way that the patient's view is structurally engrained. Our cooperation partner Science for ME - the most important international ME/CFS patient forum - has helped to shape the call from the beginning and is part of the international jury. This is unusual in research funding, but it has to be the same with ME/CFS."
"Patients are critical, detail-oriented and have high expectations," says Ströck. "No one has stronger incentives to choose the best research than those affected themselves. If patients also have expertise in relevant specialist areas, this is a particularly strong basis for excellent funding decisions." Their comments are usually "precise and lead to better research results in the end".
Another WE&ME promotion award before launch
In July, it will also be announced which project will receive the funding prize of 450,000 euros, also financed by the WE&ME Foundation and awarded together with the Austrian Science Fund FWF.
........ more at the link
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Exceptional.
From WE&ME
"Thanks to my sister-in-law Caroline Ströck, Special Operations Manager, Rudi Anschober, Advisory Board member & former Austrian Health Minister, and Ulla Eppler, who leads our fundraising efforts, for representing WE&ME at yesterday's FWF Wittgenstein Prize gala (Austria's most prestigious scientific award ceremony).
Translation:
To me, a remarkable thing about WE&ME is the way they have helped to make ME/CFS mainstream in Austria. For example, the Foundation's invitation to a prestigious science prize award night, the endorsement of senior politicians and a doctors' organisation choosing to make ME/CFS the cause that their annual ball fundraised for. ME/CFS seems to be being treated like any other serious and common disease by key decision makers in Vienna.
I know that that should be the norm everywhere, we should expect nothing less, but it's a situation that feels quite some way off elsewhere. Clearly the Foundation is working hard, and the Ströck family has personally provided a lot of funding. It would be interesting to hear what other factors the Foundation attributes its success to.
"Thanks to my sister-in-law Caroline Ströck, Special Operations Manager, Rudi Anschober, Advisory Board member & former Austrian Health Minister, and Ulla Eppler, who leads our fundraising efforts, for representing WE&ME at yesterday's FWF Wittgenstein Prize gala (Austria's most prestigious scientific award ceremony).
Translation:
Yesterday we were allowed to attend the presentation of the @FWF_at Wittgenstein Prize. The prize, often referred to as the "Austrian Nobel Prize", is one of the highest scientific honours in the country and is endowed with 2 million euros.
We are looking forward to the day when an ME/CFS researcher receives this award. Because that would be much more than a personal honour. It would be a sign that research on ME/CFS is finally getting the honour it deserves. For millions of people affected and their families. And for the chance of effective treatments and a cure.
At WE&ME Foundation, we are committed to this every day."
To me, a remarkable thing about WE&ME is the way they have helped to make ME/CFS mainstream in Austria. For example, the Foundation's invitation to a prestigious science prize award night, the endorsement of senior politicians and a doctors' organisation choosing to make ME/CFS the cause that their annual ball fundraised for. ME/CFS seems to be being treated like any other serious and common disease by key decision makers in Vienna.
I know that that should be the norm everywhere, we should expect nothing less, but it's a situation that feels quite some way off elsewhere. Clearly the Foundation is working hard, and the Ströck family has personally provided a lot of funding. It would be interesting to hear what other factors the Foundation attributes its success to.
Utsikt
Senior Member (Voting Rights)
My money is on their very long experience running a massive business, and I wouldn’t be surprised if they have good connections as well.
When you run a business, you have to do things properly or you’ll run out of money. If you’ve only ever run a charity or foundation with vague goals, you can fail for years and you won’t really get punished for it in the same way.
They clearly know how to identify goals, create actionable and appropriate strategies to reach those goals, and follow up on it.
The fact that they are willing to involve S4ME also shows that they care more about getting it right than thinking they are right.
They definitely understand the politics at play, and I mean this in the most positive and laudatory sense. This is mainly a political issue with a political solution, otherwise everything else remains blocked. Trying to just do the science part won't be enough, at least not without a chance breakthrough.
Just wow.
Further quote from that announcement —
Further quote from that announcement —
SugarSquared
Senior Member (Voting Rights)
About the three other projects funded (from the same webpage):
Some posts have been moved to a new thread for the researcher Matthias Wielscher
Austria: Matthias Wielscher - Vienna Medical University
Austria: Matthias Wielscher - Vienna Medical University