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Polio-Echo publishes "A Better Understanding of Poliomyelitis and PPS" - July 2015

Polio-Echo based in Germany is one of the smaller members the EPU family but nonetheless it helps a great number of polio Survivors through its website and publications The latest of these is called “A Better Understanding of Poliomyelitis and PPS” and is available through the Amazon websites all over the world. The book, the English version for which The EPU President has written the foreword is the result of extreme dedication and hard work by Thomas House-Arno, originally from Scotland but living in Germany for many years, and Dr. Kai Paschen.

So if you go to www.amazon.com or other European Amazon websites, i.e. .co.uk, .de, .it, .fr. .au, etc. within 3-5 days you should be able to pick up copy The booklet, as Thomas calls it - all 95 pages, is priced at €12.50, £10.20 or $19.95.

We believe it is well worth the money and a valuable contribution to the body of knowledge on PPS.

Polio Selbsthilfe e.V (Germany) TO PUBLISH Dr. P. BRAUER IN ENGLISH - OCTOBER 2012

“POLIO Selbsthilfe e.V.”, a member organisation of the EPU will publish the complete works of the Peter Brauer, MD, a medical author well known in professional fora, in the form of a 228 page paperback book entitled “Aspects of Post Polio-Polio Syndrome”.

 

The publication of English version will take place around September/October 2012. The book can be pre-ordered by clicking here.

You can read an extract from the chapter “Breathing and Sleeping Disorders in Post-Polio Syndrome” can be read by clicking here:

 

VACCINE BRINGS POLIO ELIMINATION WITHIN REACH

A new vaccine designed to combat the last two strains of polio is being used for the first time in southern Afghanistan in an attempt to eradicate the disease globally (Sam Lister writes).

The bivalent oral poliovirus vaccine (bOPV) has proven 30 per cent more effective than other formulations at tackling the two strains. There were only 1,600 new cases last year, compared with more than 350,000 in 1988, when polio was endemic in 125 countries. Now only Nigeria, India and Pakistan remain at risk and bOPV will be made available to them early in the New Year (2010). The vaccine which protects against polio types 1 and 3, has been developed by the World Health Organisation, with additional funding from the British Government Its introduction is part of the Department for International Development’s £100 million drive to tackle polio over the next five years.

The department will announce today the release of £23 million to the Global Polio Eradication Initiative. Mike Foster, the International Development Minister, said: “New infections have been reduced by over 99 per cent.”

The TIMES, London 30/12/2009

PUBLIC BROADCASTING SERVICE - USA - THE POLIO CRUSADE

The Public Broadcasting Service, funded by ther US Federal Government, commissioned and broadcast a series of programmes on polio and its medical, social & psychological effects on those it infected and affected in the middle of the 20th Century.

To watch these programmes click on this following link:-  http://www.pbs.org/wgbh/americanexperience/polio/

You can also find the whole script/text on that site of the American Experience.

It is recommedded that you are able to use a high speed broadband link to view these fascinating programmes

 

VIDEO PRESENTATIONS OF BREATHING & SLEEP SYMPOSIUM -  USA

On November 1st there was a free symposium on Breathing & Sleep for people with neuromuscular disorders in the Salk Institute for Biological Studies, USA. For European people a bit far to travel for just this one day. But the Salk Institute put videos of the presentations held at that symposium at their website www.poliotoday.org. You might be impressed by the quality of the presenters and their respective presentations. The information is extremely valuable for all polio survivors to see…not just those with known breathing problems.

People with neuromuscular conditions, like Post Polio Syndrome, often encounter difficulties seeking and obtaining proper respiratory care. Too often, primary care physicians, neurologists, and respiratory care professionals treat their respiratory problems as a lung issue, rather than as a muscle/nerve problem. And too often, sleep labs look only for obstructive sleep apnea and miss under-ventilation.


Maybe you will not only personally take a moment to view each segment of the presentations, but also you may want to put out a reminder for your members nationwide to tune in as their time permits as well. Or maybe you can use it at future PPS meetings and discuss the subject material together as a group. The more people who are exposed to it the better. And it wouldn’t hurt to share the link with medical professionals in each state and country as well.

HUMAN RIGHTS: HISTORIC RATIFICATION BY THE EUROPEAN COMMUNITY

26 November 2009
The European Community has just ratified the United Nations Convention on the Rights of Persons with Disabilities. Unprecedented step forward for the first human rights treaty ratified in the history of Europe and a great signal sent to all EU Members States.  In today’s session of the Council of the European Union, the European Community ratified the United Nations Convention on the Rights of Persons with Disabilities (UN CRPD). This ratification represents a major policy shift toward enforcing human rights obligations and putting disability on top of the human rights agenda: this is the first time in the European Union history that the Community is going to accede to an international human rights treaty.

To read more courtesy of the European Disability Forum press release click here (MS Word)

WORLD POLIO DAY – 24 October 2009

To mark World Polio Day on 24th October 2009 , Radio Netherlands Worldwide (www.rnw.nl) in conjunction with the world renowned Prof. Frans Nollet and his department at the Amsterdam Medical Centre, made a video on Post Polio Syndrome (PPS). It has been posted on You Tube with English subtitles and might be published in other languages later as well. You can view it on You Tube at http://www.youtube.com/watch?v=z_jpIatC_L4

 

European Polio Union Achieves Legal Staus with Registration in Belgium - September 2009

The EPU has registered in Belgium as a IVZW. (IVZW means: Internationale Vereniging Zonder Winstoogmerk (International Non-profit Association, pursuant to Belgium law).

IVZW registration no.: 0817.863.022.  The principal office address is : Walvisstraat 32, 2018Antwerp, Belgium.  For further details go to our Contact page

 

The EPU joins FAIB - September 2009

The European Union has further strengthened its international ties by joining Fédération des Associations Européennes et Internationales établies en Belgique (Federation of European and International Associations Established in Belgium)


LETTER FROM OUR CHAIRMAN 27/05/2009

Dear EPU Member,

First of all, I want to apologize for the lack of progress that has been made in the last two years. A number of things, outside our control, counted against us, but rather than make excuses, can we please look forward, as we are now going forward, and have made good plans for the future.

We now have registered our company in Belgium, and have opened a bank account in Huldenberg, Belgium (we will send you the details soon). The change from having it in the UK was because the alteration in the value of sterling was costing us considerably.

We have joined the Federation of European and International Associations (FAIB) after a lengthy application, as we understand they will be very helpful in any negotiations with the European Committee.

We are also members of  the EFNA (European Federation of Neurological Associations) and EURORDIS (European Organization of Rare Diseases) and are registered in PatientView.

We have had a fruitful meeting in Amsterdam with Prof. Frans Nollet (you will remember he spoke in both Como and the European Parliament). Out of this meeting it has been decided to hold a European Conference with European Polio experts, and this should take place in the second half of 2010. At the moment we are starting to put arrangements in place, and we will keep you informed. Frans also gratefully accepted to be medical advisor of the EPU. He also studied the concept of the EPU register and gave some useful comments about this project.

We have arranged our AGM for this year to take place in Lille, north-east France, on Sat. 19th September. Full details will be circulated to all during July, but please note the date.

A lot of work has gone into the website, and it will be completed by the end of July. So please log onto www.europeanpolio.eu  on 31st July and we hope and think you will be pleased.

Our new leaflet is being proofed and will be available once the details have been completed. It will be sent to you by the end of June.

I hope that you will see that we have been working on your behalf, and once again I apologize for delays in recent times. I will write to you again with full details of the AGM in a few weeks.
Yours sincerely,
Johan.


BOARD MEETING  May 2009 in LEIDEN, The Netherlands.

On May 12 and 13 the EPU board had a meeting in Leiden. On the 13th the board also had a meeting with Prof. Dr. Frans Nollet in Amsterdam.

Margret Embry was present at this meeting as she was asked to take over the financial part of the EPU from the UK (Helen/Heike). Due to busy work and the recession the UK could no longer do this. Margret accepted to be the treasurer and to open a bank account in Belgium, which is much better anyway as the account then is in Euro (€)instead of British pounds (£).  In Lille the AGM will be asked to officially approve this. Margret’s address will also the place where EPU records will be kept, like bank statements, minutes of meetings and other official papers.

On the agenda was the registration of the EPU as a nonprofit organization in Belgium. After the UK put a lot of work into trying to get the EPU registered in the UK as a charity, all parties decided it would be much easier to register in Belgium.

We further discussed the changing of the rules as was on the agenda of the AGM 2008 and will again be on the agenda of the AGM 2009 in Lille. There is a proposal from Spain and one from the EPU board. It will be send to all the members in due time for the AGM.

We then discussed the new version of the flyer, which is being prepared by Hugh Hamilton, the progression of the website (by John McFarlane and Els Symons), the register/questionnaire (Daniel Peltzer, Brigitte Bonnin, Michelle Dives) which is reaching the final stage and the organization and program of the AGM in Lille 19th sept (Brigitte Bonnin and EPU board). 

Frans Nollet was invited to be medical advisor of the EPU which he accepted. During our meeting with him in Amsterdam we discussed the organization of the EPU, fundraising, organizing a European conference on PPS for polio survivors ánd for medical professionals (a good opportunity to form a platform of PPS experts in Europe), the research that is currently being done on PPS, our register/questionnaire (Frans will give us his final comments in writing), the EPU website and what to put and not to put on it as far as medical information is concerned. On you Tube you can find the presentation he gave in Denmark with the data he received from the EPU members a few month ago under “Nollet-illustrations”. If Nollet is free on sept 19th  he will come to lille and talk about shoulder problems.


DOCUMENTARY  “THE POLIO CRUSADE”

This very interesting documentary is part of the series "American Experience".

It interweaves the personal accounts of polio survivors with the story of an ardent crusader who tirelessly fought on their behalf while scientists raced to eradicate this dreaded disease. The Polio Crusade features interviews with historians, scientists, polio survivors, and the only surviving scientist from the core research team that developed the Salk vaccine, Julius Youngner.

Based in part on David Oshinsky’s Pulitzer Price-winning book, "Polio: An American Story", this one-hour film chronicles a decades-long crusade, fueled by the bold leadership of a single philanthropy and its public relations campaign, and features a bitter battle between two scientists and the breakthrough of a forgotten woman researcher.

You can watch it on www.pbs.org/wgbh/americanexperience/polio.

On the site you also find the complete transcript of the film. Unfortunately the DVD of the film can only be ordered in the Us and Canada. 


EPU JOINS EFNA and EURORDIS

In 2008 EPU joined EFNA (European Federation of Neurological Associations) and EURORDIS (European Organisation for Rare Diseases).

If you are interested, visit their websites: www.efna.net and www.eurordis.org .

Report from Els Symons visiting EFNA in Brussels, November 2008

I had a very good 2 days in Brussels with the EFNA. They are an inspiring organisation and I was especially impressed with the knowledge and enthusiasm of their chair, Mary Baker from the UK.


We, the EPU, were warmly welcomed as a new member. I gave a talk about the EPU and about Postpolio Syndrome. They were very impressed by the PPS story and Mary Baker is going to think about how they can create more awareness for PPS.

They also recognise the problems we face with the EPU as a starting organisation.
Now, next weekend, there happens to be a conference in Brussels about this exact issue. The EFNA is organising this 3 days event with the Medtronics Foundation, called: "Patient Link Workshop". All the expenses are paid for, so it does not costs us a penny. They were able to squeeze me in at the last moment and I am certainly going. It has a lot of issues that can be very beneficial for us.

The Medtronic Foundation www.medtronic.com/foundation might also be useful to us in the way of money. They give grants to organisations like the EPU. It looks really worthwhile.

The PatientLinkWorkshop from the Medtronic Foundation + EFNA in Brussels was very good, excellently organised, good speakers, luxury, very weary, inspiring etc.


I learned a lot about Creating Awareness, Health Technology Assessment and Fundraising.
I networked a lot and told everybody about PPS and the EPU (= creating awareness).
I talked to 3 different persons from the Medtronic Foundation, trying to convince them to “adopt Postpolio” and donate money to the EPU.


They are going to bring me in contact with the Dutch representative of the Medtronic Organisation to talk about this. If I don't succeed that way, then Mary Baker from the EFNA is going to try to get money for us from them under the umbrella of the EFNA; they finance the EFNA and since we are part of them now, we could succeed that way.

Polio Rally in Brussels on the 16/10/2007

For the World Polio Day the European Polio Union (EPU) held a demonstration in the centre of Brussels in order to draw attention to the needs of people with polio and post polio syndrome in Europe. The demonstration took place on 16 th October 2007 in front of the European Parliament.

As you can see from the photos the rally was crowed and animated. The participants came from the 12 countries of EPU, representing over one million people in the EU living with polio or post polio syndrome.

The rally was followed by a meeting in the European Parliament on the 17 th October 2007.
The meeting took place in conference hall (see picture). In attendance there were members of the European Polio Union, Members of the European Parliament (MEPs) and health professionals.

Leaders in their field, Professor Kristian Borg from the Karolinska Institute and Professor Frans Nollet from the University of Amsterdam, who talked about post polio syndrome and stress the need to work together on a European level.

Graham Ball, Chief Executive of the British Polio Fellowship said, "Whilst polio has been eradicated in most of Europe there are approximately one million people living in the EU with the effects of polio and post polio syndrome. These people need a tremendous amount of help and support, most are severely disabled and post polio syndrome is making their plight even worse."

The EPU is calling upon the European Parliament to ensure that post polio syndrome is correctly acknowledged in all member states and that significant resources are put into its research, treatment and information requirements.

Prior to the meeting member countries have contacted their own MEPs to request their support and at present 70 of these MEPs have signed the EPU's petition (list).


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