Feb 20, 2020
Life after stroke is a key priority within SAFE’s strategy. It is our pleasure to share with you the date of the first European Life After Stroke Forum – the 19 November 2020 in Barcelona, Spain.
This first European Life After Stroke Forum is driven by the need to implement the Stroke Action Plan for Europe and to create a network of stakeholders involved in professionally researching, advocating and providing evidence for improved life after stroke care.
SAVE THE DATE – EUROPEAN LIFE AFTER STROKE FORUM, 19 NOVEMBER 2020, BARCELONA, SPAIN
We hope we could get you to support the European Life After Stroke Forum by sharing this information with people you know.
When? 19 November 2020
Where? Hotel Catalonia Barcelona Plaza, Barcelona, Spain
Who can attend? Organisations and individuals who operate in the life after stroke area and are research, policy, advocacy or support oriented.
How to register? The registration link will be available soon. Stay tuned!
Please put this date in your calendar and stay tuned for more information that will follow.
We hope to welcome you to Barcelona,
SAFE team
Feb 20, 2020
Turning the Tide is a series of 26 mini-films from 24 countries, presenting the bold actions being carried out by communities and organisations to take on the world’s biggest killers – non-communicable diseases, like cancer, diabetes and lung disease – and bring better health for all.
Time is everything when dealing with stroke patients, but many hospitals are not “stroke ready”. Every 30 minutes a stroke patient who could have been saved, dies or is permanently disabled, because they were treated in the wrong hospital.
The Angels Initiative is building a global community of stroke centres and stroke-ready hospitals, working every day to improve the quality of treatment for every stroke patient. The story in this video would have been very different if it wasn’t for a joint effort of the Angels Community.
The man who can be seen in the video is one of the lucky ones. Both he and his wife are medics, so, when he collapsed from a stroke in his home in Sofia, Bulgaria, his wife instantly recognised what happened and knew that she had to act quickly. He was swiftly taken to the nearest stroke-ready hospital and was treated immediately by the responding doctors. Thanks to a swift reaction from their colleagues, medics who work in the stroke-ready hospital and to the timely received treatment, the man was able to recover. “I started to go shopping. I started driving. I started to feel like a normal human being again. These days I realise how blessed I was to have fully recovered to be with my family, my children and my grandchildren” he said.
Please watch the video and see how having stroke-ready hospitals helps #TurningTheTide.
The video was produced by the NCD Alliance and BBC StoryWorks
The Angels Initiative, launched by Boehringer Ingelheim in partnership with the European Stroke Organisation (ESO), and the World Stroke Organisation (WSO), the Stroke Alliance for Europe (SAFE) and others is set to improve acute stroke care, by increasing the number of patients treated in stroke ready hospitals and optimising the quality of treatment in all existing stroke centres. For more information about Angels Initiative, please visit www.angels-initiative.com
Image source: The video print screen
Feb 19, 2020
ESO-WSO 2020 congress is fast approaching. For the first time, two large congresses, the World Stroke Congress and the European Stroke Congress will merge into one, bringing together stroke researchers, medical experts, patient organisations, pharma industry, medical devices manufacturers and many others to Vienna, Austria between 12 – 15 May 2020.
The Stroke Alliance for Europe will have a stand at this big event, seizing opportunity for a direct communication with the congress delegates and promoting our flagship projects.
The ESO-WSO 2020 Key Dates
Late Breaking Abstract Submission: 24 February – 1 April 2020
Early Registration Deadline: 17 March 2020
A United Voice for Stroke
ESO-WSO 2020 will give people the opportunity to meet, discuss and learn from international speakers and peers. The Conference will be the biggest stroke conference to date!
If you wish to register and take advantage of the early bird rates that are available until 17 March 2020, visit eso-wso-conference.org for more information.
Feb 7, 2020
Since 2018, SAFE has participated in the Angels Initiative project providing patient perspective and enabling better patient-doctor communication. The project was so far realised in two phases. In the first phase the patient-centered, evidence-based brochures were translated to 13 languages and distributed in 12 countries, in designated stroke hospitals. In the second phase, conducted in late 2019 and early 2020, the project expanded to include even more countries and languages, increasing reach of these information in 15 European countries.
“It’s proven great to have these books and be able to use them as a tool for raising awareness of stroke prevention and treatment among patients, caregivers and people interested in stroke.”
Hrvoje Budinčević
President of the Croatian Stroke Society / Hrvatsko društvo za prevenciju moždanog udara
The brochures were differently formatted, this time being comprised in one booklet containing five types of stroke-related information. SAFE is proud to report that in the second phase 17 out of 34 its stroke support member organisations participated, making these materials available in 14 languages: Spanish, Serbian, Croatian, Catalan, Georgian, Ukrainian, Greek (Greece), Slovakian, Polish, Turkish, Macedonian, Greek (Cyprus), French, Czech and Hungarian.
“International collaboration of SSOs obviously implies exchange of experience and sharing best examples of materials, ideas, projects, etc. From this point preparing of the set of translated and localized education materials on stroke for patients and general population, initially elaborated by one of the leading SSOs in the world, UK Stroke Association, translated to local languages by national SSOs in several countries with support of SAFE and Angels Initiative, is a great experience, showing all of us that we are not alone, and inspiring us for further own efforts.”
Dmitriy Gulyayev
Director of education, research and publishing projects
Ukrainian Anti-Stroke Association
The project was a great success in all countries where it was presented, clearly demonstrating that there was a gap in availability of stroke-related information among patients. Subsequently, it also brought additional quality to doctor-patient communication in hospitals where patients received these books.
The information provided in the books were kindly provided by the Stroke Association UK*and then translated to all project languages, applying the information standard procedure for the translation.
The original brochures are in English language and you can access their original content by following the links below:
Transient ischaemic attack
Next steps after stroke
Supporting a stroke survivor
When you have a stroke
How to reduce your risk
“The Angels project and the brochures are helping us to connect patient voices. I see in it the potential for a possible change in the healthcare system. It means in cooperation with Ministry of Health to set up guidelines which will contain uniform information, for what are patients after stroke entitled in social, physiotherapy or speech therapy sphere.”
Alžbeta Husarovič, President of Porazka.sk
On this link you can find PDF versions in following languages: Greek (for Greece and Cyprus), Hungarian, Czech, Croatian, Serbian, Macedonian, Turkish, Ukrainian, Georgian, Spanish, Catalan, Hungarian, Polish, Slovakian and French.
SAFE Angels Patient Books for Download
To access the last year’s version of books in Latvian language, please click here.
“SAFE Angels books offer consistency of messages, availability of the required information and ability to share this information. Apart from health-related information, they offer plenty of beneficial advices and solutions for obstacles that patients and their caregivers face every day. After using these books for two years, we think they have helped patients to improve their knowledge, compliance to treatment, self-confidence and self management after stroke.”
Maja Bozinovska Smiceska
President of the Macedonian Stroke Association “Mozočen Udar”
SAFE would like to thank and acknowledge support received from our member stroke support organisations who participated in this project:
Serbia: Serbian Stroke Association
Croatia: Croatian Stroke Society
Spain (Catalonia): Fundacio Ictus
Spain: Federacion Espanola de Ictus
Czech Republic: Sdruzeni SMP
Czech Republic: Cerebrum
Georgia: Medical Foundation Mkurnali
Ukraine: Victory over Stroke
Ukraine: Ukrainian Anti-Stroke Association
Hungary: Stroke Liga Nemzeti
Poland: Fundacja Udaru Mozgu
Macedonia: Macedonian Stroke Association “Mozočen Udar”
Greece: HAAS
Turkey: Beyinder
France: France AVC
Slovakia: Porazka.sk
Cyprus: Cyprus Stroke Association
Luxembourg: Bletz ASBL
About the joint SAFE Angels Initiative project
The mission of Boehringer Ingelheim’s (BI’s) Angels Initiative is to increase the number of patients who can be treated in stroke-ready hospitals and to optimise the quality of treatment in all existing stroke centres. The Stroke Alliance for Europe (SAFE) has partnered with BI to support this ambitious project, adding an important dimension: the patient perspective. SAFE’s involvement means patient-focused information will be available to patients and their carers as soon as they arrive in all stroke units.
About Angels Initiative
Every 30 minutes a stroke patient who could have been saved, dies or is permanently disabled, because they were treated in the wrong hospital.
Angels Initiative is building a global community of stroke centres and stroke-ready hospitals, working every day to improve the quality of treatment for every stroke patient.
In 2017, the Angels Initiative was endorsed by European Stroke Organisation (ESO), the largest European organisation of stroke professionals.
For more information about Angels Initiative, please visit www.angels-initiative.com
Feb 6, 2020
Nenad Nikolić, Stroke Association Serbia’s Secretary
Author: Nenad Nikolić, Stroke Association Serbia’s Secretary and Stroke Survivor’s #BrainLifeGoals project manager
During the Brain awareness week, held 11- 17th March 2019, all around the world, many of actions and campaigns took place, aiming to raise public awareness of the progress and benefits of brain research. It was a chance to inform people about the progress in diagnosing, preventing and treating brain disorders. Our Stroke Association Serbia is involved in European and World stroke campaigns, so we used the opportunity to inform our followers about it, using social media and our website.
It was around that time that the European Federation of Neurological Associations launched #BrainLifeGoals campaign. The goal of this campaign is to show and explore aspirations and desires of people who live with brain disorders. Hashtag #Lifegoals has become a popular trend among social media users, clustering their shares about goals and achievements. Sometimes those goals were to have some clothes designed by a famous fashion designer, to earn a lot of money, to travel to exotic destinations, drive a new car… For a person with a brain disorder, these are not important goals- this is luxury, because these people strive for some „basic“ things such as being able to walk again, to read, to write, to talk etc. Things on a daily basis that most of us do automatically and easily can be an achievement and a life goal for someone with brain disorders. We can call them #BrainLifeGoals.
Our Association recognized the importance of this particular campaign because we could easily relate to it. We decided to support it with active participation. Since I have been managing our Association’s Facebook and Twitter page, and have a very active communication with our followers, I was privileged to receive many people’s stories about their personal experience with stroke.
We decided to publish stories of people with stroke, with an emphasis on their #BrainLifeGoals during their recovery. Than we asked and encouraged those people, most of being in their twenties and early thirties, to share their stories publicly, and to raise awareness of all the problems they’re facing, but also to encourage others with stroke and give them strength to continue their daily struggle with stroke consequences.
No matter how hard we try to advocate for stroke, no one can do it better than someone who has experienced it.
Preparing these stories was a bit of challenge, because there is a lot to be said, and I needed to prioritize. I felt a lot of responsibility, because I was writing about someone’s life, and it had to be done the right way and without many medical terms in order to make understandable for broader audience. The facts and events they told us were shaping stories. Each story was different and had its own concept. All these stories contain variety of emotions: Fear, anxiety, uncertainty, but also hope and huge amount of willpower and support. These stories carry strong messages. Almost every storyteller’s life has changed drastically and these people have now completely different views on life and its aspects, many of them have new hobbies, new healthy habits, many changed their nutrition habits to healthy diets, many of them became more stress tolerant… Highlighting these changes felt like a very important thing to do.
Predrag M. – A middle school physics teacher, a father and a stroke survivor whose #BrainLifeGoal was to be able to read again.
Their #BrainLifeGoals vary from person to person. For someone it was babysitting and playing with their children, for someone cycling, reading, walking without help to nearby sightseeing… Eight stories have been published so far, and some of storytellers had a stroke at the age of 18 and 19! Several more stories are in preparation and will be published soon. Some of our story tellers- Stroke Survivors, had a stroke in their sleep, some while on work. It is clear that stroke can happen anytime, anywhere, to anyone. All these stories have a strong empathetic potential and when read, the reader is faced with situations and problems that the survivors are facing every day. If these stories are encouraging people to think that way, it is our victory! We modified our website www.mozdaniudar.org so every single published story is on one page that can be easily accessed with only one click www.mozdaniudar.org/wp/brainlifegoals/
Except for the important messages stroke survivors tell, it is very important to underline that they also talk openly about stroke. This is, once again, very important, because these wonderful people are encouraging others with stroke to talk freely about their problems, and prevent stigmatization of stroke patients.
The usual procedure is that we first share story on our website and social media accounts, than we translate it to English, and later EFNA shares them on their site www.efna.net/brainlifegoals/ . This way, stories of stroke survivors reach larger international audience. Other Internet portals sometimes share our stories, and we are happy about it. We started with a story of a mother of three who suffered a stroke at 40. Her basic motivation and #BrainLifeGoal was to play again with her children. We continued Campaign with a story of young nursery teacher who had a stroke, and after she recovered, she won a medal in downhill cycling! This inspiring story shows that not only recovery is possible, but also excellent results can be achieved.
Marina K. – A Downhill Biking Champion, a mother and a stroke survivor
In all our cover stories focus is on a stroke survivor, which is very important. For me personally, participating and managing Campaign #BrainLifeGoals in Serbia is a big pleasure, and I really enjoy working on this. I am very proud that our participating in this campaign with working title “Stroke survivor’s brain life goals” is rewarded by EFNA with a grant that really meant a lot to our organisation and helped us organize our core activities.
We are all excited because we feel that we are doing a right thing, helping to raise public awareness about stroke and difficulties that stroke survivors are experiencing in their life after stroke. In a way, we became a “PATIENT VOICE” which is one of our SSO’s basic purposes, and a slogan of the Stroke Alliance for Europe whose member we are proud to be – “The Stroke Patient Voice in Europe”.
Image credits: All images used in this article are property of the Stroke Association Serbia.
Jan 15, 2020
We are delighted to share with you a report from the German Stroke Foundation about their key activities between July and December 2019. We hope it will inspire you and your organisation for activities in your country.
World stroke day: “Every step counts”
Miriam_Mashkoori, World Stroke Day 2019
Statistically 25 percent of the worlds population gets a stroke. This also means: 3 out of 4 people do not get a stoke!
Around World Stroke Day (October 29th) the German Stroke Foundation raised awareness for stroke-prevention with the slogan “every step counts”. Many papers published the press release with tips for a healthier lifestyle, radio-stations aired an interview with the foundations prevention-expert Miriam Mashkoori. On Facebook people explained how they lost weight or managed to quit smoking to motivate other Facebook-users to live a healthier life.
Summer Camp for children and their families
How will my child develop? How will it do in Kindergarten or school? How do we cope with social challenges and which therapies are best with for our child? The diagnosis “stroke” raises many questions – especially when a child is affected. The three day “Summer Camp” offered families with a child affected by stroke an opportunity for an informative and fun-filled weekend. Experts answered questions, psychologists helped developing new perspectives, singer Patricia Kelly gave an exclusive concert and former world-class Wrestler Alexander Leipold offered sport-activities for the children.
Tea Time with Liz Mohn
The foundation´s president and founder Liz Mohn invited stroke survivors and supporters of the foundation for a Tea Time. She met and spent a wonderful afternoon with people who were especially engaged in our foundation´s activities.
Workshop for young stroke-survivors
A stroke affects every aspect of life. Young survivors are even in a special situation. They want to return to work, build or maintain relationships and live an independent life – which is not always possible. In a four-day workshop they had the opportunity to talk to psychologists and doctors and to exchange their own experiences. Word-class Mountainbiker Peter Schermann talked about his return into sports after his stroke.
Public talk about reintegration in working life
After an accident or an illness it is often hard to return to work. Some might not be able to work full hours anymore, others might have to find a completely different job. A staff member of the employment office, an integration expert and a coach for job applications informed about opportunities to get back to work at the event “Forum Schlaganfall (Stroke Forum)” at the German Stroke Foundation in Gütersloh.
Politican Andrea Milz visits the Stroke Foundation
Andrea Milz
The North Rhine Westphalian secretary of state for sports and volunteering, Andrea Milz, visited the German Stroke Foundation to talk about the volunteer-project “stroke helpers”.
As a certified Zumba-trainer she also gave a Zumba-lesson at the local High School. The High School offers optional medicine-classes for its students and cooperates with the foundation.
Speakers of self support groups meet
Speakers of self support groups do not only organise meetings and events for their groups. But they also need to know about relevant changes in law, new therapies or other important aspects about stroke. This is why the foundation offers workshops for speakers of self support groups all over Germany.
Cooperation with TV-show “Unter uns” ends
Patrick Müller
One of the main characters in the popular TV series “Unter uns” has had a stroke in one of the episodes in May. According to the storyboard lawyer Tobias, played by actor Patrick Müller, suffered from hemiplegia and severe speech problems. The team and cast of “Unter uns” cooperated with the German Stroke Foundation in order to create a realistic storyline. The cooperation know officially ended. The fan-club donated more than 1400 Euros for the foundation.
Experts meet to learn about stroke in children
Not many people know that children can have a stroke. Even experts like podiatrists or therapists often don’t have sufficient information about the topic. The German Stroke Foundation wants to change this by inviting experts to learn more about child stroke. More than 40 doctors and other experts met in Bavaria in 2019.
Photos: German Stroke Foundation, 2019
