#BrainLifeGoals Campaign: A Serbian Story             

#BrainLifeGoals Campaign: A Serbian Story             

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.

 

 

 

The German Stroke Foundation just published the half-year report: Young stroke, prevention and return to work in focus

The German Stroke Foundation just published the half-year report: Young stroke, prevention and return to work in focus

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

SAFE Annual Report 2019

SAFE Annual Report 2019

You can access and download the SAFE Annual Report by clicking on this button below

SAFE Annual Report 2019

In addition, please see below the message of the President of SAFE, Jon Barrick:

This has been a busy and exciting year for our organisation, especially in terms of advocating on pan-European level. We have continued work around the Stroke Action Plan for Europe, forming an implementation committee with the European Stroke Organisation. We held a seminal event at the EU Parliament raising the profile of stroke more than ever before, engaging with the Deputy Director General of the EU’s DG Sante and the EU Committee of the Regions. Through our funding of Oxford University’s project on the economic impact of stroke, we have produced up to date and compelling evidence about the cost of stroke in Europe. With all this accomplished, we continue to press ahead, as we have now completed the third and final year of the research which will provide us with vital European and country specific data on the future economic impact of stroke and power of interventions. The Economic Impact of Stroke in Europe report will be launched in full at the Joint World Stroke Organisation/European Stroke Organisation conference in Vienna in May 2020.

We have continued with the Angels project to produce vital information booklets on stroke to distribute to patients and families while in hospital. We have provided this information in 15 different languages to ensure that more people across Europe can use our materials to improve the lives of stroke survivors.

We continue our educational work with those who wish to understand stroke support organisations and become advocates for better care through our online teaching and learning tool SSOFT, and our regional and working conferences. A particular highlight for me in 2019 was the concrete evidence of the value of our partnership orientation, our Industry partners have been very supportive again, our outreach to ESO has been reciprocated, and we continue to see the number of SSO’s grow, and then become members of SAFE. Yet again we go into a new year with record membership which bodes well for the future.

As SAFE goes from strength to strength in activities to reduce the number and effects of strokes, the Board must also ensure the long-term sustainability of SAFE. The Board has achieved much of its work through dedicated voluntary time but has recognised that this needs to be added to by full
time paid staff. The Board agreed that SAFE required more permanent leadership to drive forward and to achieve our goals. I am delighted to let you know that we recruited our first Director General this year and I know you will all join me in welcoming Arlene Wilkie into the SAFE family.

In 2019, we have been able to deliver many significant achievements because of our close working community. I would like to thank those that have worked with and for SAFE this year, and to the members and sponsors who have supported us practically and financially. This next year is my last as President and I am looking forward to ensuring we have a solid 2020 of achievement to strengthen the long-term sustainability of all stroke support organisations in Europe.

Jon Barrick
SAFE President

World Stroke Campaign Awards: Nominations for 2019 World Stroke Day campaigns are open

World Stroke Campaign Awards: Nominations for 2019 World Stroke Day campaigns are open

World Stroke Campaign Awards recognize key achievements in raising awareness of the World Stroke Day campaign themes and messages. Nominations for 2019 World Stroke Day campaigns are open until 19th December 2019.

To apply for an award, please visit the World Stroke Campaign website, click on the relevant award category and complete the online application form.

Award winners are featured on the World Stroke Campaign website, media and social media channels and will receive free annual membership of the World Stroke Organization which facilitates free access to the International Journal of Stroke and World Stroke Academy education resources.

For more information, contact Sarah Belson, WSO International Development Manager at sarah.belson@stroke.org.uk

PRESTIGE-AF second annual meeting held in Graz, Austria on 6th December

PRESTIGE-AF second annual meeting held in Graz, Austria on 6th December

First published on https://www.prestige-af.org/

Another year, another successful annual meeting. Hosted by PRESTIGE-AF partners, Medizinische Universitat Graz (MUG), the PRESTIGE-AF consortium convened in the idyllic and picturesque town of Graz in Austria on the 6th December for one full day of intense presentations, parallel session discussions and Scientific Advisory Board feedback.

The day started early at 8am, inviting the medical students of MUG to a seminar on the PRESTIGE-AF project. Dr Thomas Gattringer who is Additive Specialist Neurological Intensive Care at MUG, focussed his talk on the diagnosis and treatment of haemorrhagic stroke. With final remarks discussing the identified gaps in treatment guidelines, Dr Gattringer provided a smooth segue for Prof Roland Veltkamp to speak about the PRESTIGE-AF study. Coordinator of PRESTIGE-AF and Chair of Stroke Medicine at Imperial College London (UK), Prof Veltkamp explained to the students what PRESTIGE-AF, as an EU-funded, international collaborative research study, hopes to achieve in closing these gaps in stroke treatment guidelines and the expected research and patient impacts.

After these talks, the PRESTIGE-AF consortium gathered and work group leaders provided updates on their research progress from the past year. A well-deserved lunch brought in the afternoon parallel sessions. With one group discussing predictive modelling and the other clinical trial coordination, partners used the time to ask each other questions and clarify the particulars around the PRESTIGE-AF clinical trials including protocols, responsibilities and technical requirements.

You can read the full article here.

 

 

SAFE Working Conference and General Assembly held in Porto, 27-29th November 2019

SAFE Working Conference and General Assembly held in Porto, 27-29th November 2019

„This year’s Working Conference was a little different compared to others, because every single delegate who registered actually came to the conference“, said Jon Barrick, SAFE President in his opening remarks of the most important SAFE annual event.

More than 80 delegates from over 30 European countries gathered in Porto, Portugal for this year’s conference and General Assembly.

The Working Conference agenda covered important topics ranging from SAFE’s advocacy work and workshops about growing a stroke support organisation, to vitally important day-to-day topics such as stroke and intimacy, fatigue after stroke and travelling if you are a stroke survivor.

On the first day of the Working Conference SAFE’s most important project in 2019 was presented – The Economic Impact of Stroke in Europe Report.This pivotal piece of research into the health economics of stroke in Europe was presented by Ramon Luengo Fernandes, research lead on behalf of the University of Oxford and Gary Randall, SAFE’s Research Manager and volunteer.

“The Economic Impact of Stroke in Europe Report provides persuasive arguments for stroke to be considered as an investable proposition. We hope we have brought enough hard evidence for our partners, medics, researchers and policy decision makers to see the clear potential for investment in stroke prevention, treatment and life after stroke as a way for saving more lives and reducing future costs” said Arlene Wilkie, SAFE Director General and the chair of this session.

The whole session with the presentation of the results was live tweeted and shared via SAFE Facebook page.

You can see the agenda of the SAFE Working Conference here.

The second day was about practical information on how to grow an SSO, presented by Sarah Belson from the World Stroke Organisation. ‘How to develop your organisation’ is of course a huge topic, but having spoken to a number of you I recognise that some of the most valuable learning you take from SAFE, is hearing from the experience of other SSOs” said Sarah Belson. She presented four case studies from the Cyprus, Finland, Poland and Israel SSOs.

SAFE’s General Assembly was held on 29th November. Apart from voting for very important updates in the SAFE Constitution, new members were welcomed to the Board and three new organisations joined SAFE- Moždani Val from Croatia, Ukrainian Anti-Stroke Association and Turkish Cerebrovascular Diseases Society. The SAFE Assembly voted with much regret for the expulsion of the Austrian SSO, as this member failed to fulfill its membership duties.

There were three new candidates for the Board and three candidates from the previous Board were standing for re-election. After expressing unanimous decisions for each candidate, delegates’ vote lead to SAFE having the full Board in 2020. The new Board consists of 11 members:

Jon Barrick, SAFE President, UK

Anita Arsovska, Vice President, North Macedonia

Marina Charalambous, Secretary, Cyprus

Chris Macey, Treasurer, Ireland

Grethe Lunde, Norway

Ivan Milojević, Serbia

Derya Uluduz, Turkey

Dmytro Gulyayev, Ukraine

Hrvoje Jurlina, Croatia,

Hariklia Proios, Greece

Pnina Rosenzweig, Israel

After 15 amazing years of serving #SAFE, Markus Wagner from the German Stroke Foundation Stiftung Deutsche Schlaganfall-Hilfe was presented with a token of our appreciation for all of his hard work as a SAFE Board member, Past-President and a VP. We really appreciate Markus as a colleague and a friend and we hope he will continue to share his experience and ideas with SAFE.

 

The next General Assembly will be held on 20th November 2020 in Barcelona, Spain.

 

 

 

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