Oct 21, 2018
At this year’s World Stroke Congress In Montreal, Canada, SAFE was present through a variety of activities, from chairing stroke support sessions, being one of the key speakers and presenters, having a very well noticed and visited information stand, to actively participating in the World Stroke Day workshop and shaping the World Stroke Campaign in the years to come.
SAFE President Jon Barrick presented the SSOFT project, an online ‘how to’ toolkit for a range of advocating skills training, from setting up a stroke support organisation to leading PR and advocacy campaigns. This tool aims to build capacity of the European SSOs but can be used much broader to increase one world voice for stroke. His presentation sparked interest even among SSOs from other continents leading to an interesting exchange of ideas and suggestions for its further development. The SSOFT project will be completed by end of November 2018. Project team are looking at the future development such as translation into other languages, additional modules, global scope, said Barrick, but it is depending on funding. The presentation was broadcasted live on Facebook and the video can be found here.

In addition to the SSOFT project, SAFE had a chance to present the economic Burden of Stroke Report, scheduled to be published towards the end of 2019, as well as the SAFE & Industry Partner collaboration project on Life With Spasticity.
However, the Stroke Action Plan for Europe 2018-2030, a joint SAFE and ESO project got the majority of attention due to the fact that it just has been launched in May this year and is aimed to set the road map for stroke prevention, treatment and life after stroke in Europe in the next 12 years.
Successful examples and case studies from around the world, such as the one of the Swedish Stroke Registry and their latest project about caregivers and how they are coping with the consequences of strokes in their loved ones. The need for comprehensive and systematic follow up reviews for stroke survivors, after 3, 6 and 12 months was particularly stressed out.

Prof. Bo Norrving
We heard from Prof. Bo Norrving, University of Lund, Sweden, that one of 6 strokes was eradicated in Sweden over the last 6 years, meaning 14,000 in absolute number of strokes, and saving one billion euros. The reason for this success lays in treatment of TIA, atrial fibrillation and use of preventive medications. Stroke is probably the single most preventable disease of all. It may be that I am wrong, but I would like to be proven to be wrong, said Prof. Norrving.
During a separate open session on stroke as part of the non-communicable disease, Stephanie Mohl on behalf of American Heart and Stroke Association opened the conversation saying: Here we are in 2018 and we still need to talk about why patients need to in center of the healthcare, pointing towards all of the necessary efforts to convince the policy decision makers to listen to the patient voice in almost all parts of the world.
The way non-communicable diseases were addressed so far by the policy makers, the NCD acronym might as well stand for No Can Do, said Jon Barrick. This needs to be changed, but we need to be aware that people don’t put energy into hopeless campaigns, so stroke support organisations should be more active in showing perspectives and opportunities for stroke survivors and their carers.
SAFE was active on social media during the whole three days of the World Stroke Congress. For more information, please visit our social media accounts on Facebook and Twitter.

An open session on stroke and non-communicable diseases
Oct 14, 2018
The story first appeared on ScienceDaily.com
New findings suggest that diet is a major contributor for the increased risk of hypertension in black compared to white Americans. The results, published in the Journal of the American Medical Association, are part of the Reasons for Geographic and Racial Differences in Stroke (REGARDS) study, which looks at the incidence of stroke in approximately 30,000 individuals. The study is funded by the National Institute of Neurological Disorders and Stroke (NINDS), a part of the National Institutes of Health.
“This study addresses a lead cause of racial disparity in mortality and identifies potential lifestyle changes that could reduce racial disparities in both stroke and heart disease,” said Claudia Moy, Ph.D., NINDS program director and one of the study authors.
In the study, led by George Howard, Dr.P.H., a biostatistics professor at the University of Alabama at Birmingham, researchers studied individuals over the age of 45 over a period of 10 years and looked to identify risk factors associated with the higher likelihood of developing high blood pressure in the study participants.
“The majority of disparities we see in the health of black versus white Americans are cardiovascular in nature,” said Dr. Howard, “and of these, all are tied to an increase in high blood pressure.”
For both men and women, a diet composed of high amounts of fried and processed foods and sweetened beverages was the greatest factor associated with why blacks are at a greater risk of developing high blood pressure compared to whites. For both men and women, other important factors included salt intake and education level. For women, additional factors contributing to the racial difference in high blood pressure included obesity and waist size.
“One of the main factors affecting the difference between the black and white population is cardiovascular disease, and the increased risk of high blood pressure among black Americans could help explain why their life expectancy is four years shorter than that of whites,” said Dr. Howard. “Understanding how we can prevent this increased risk of hypertension in blacks is critical for reducing health disparities among the black population.”
The researchers hope that these findings could be applied to reduce the prevalence of hypertension and thus the risk of stroke and heart attack in the black American population. This study suggests that lifestyle changes, particularly changes in diet, could help reduce the disparities seen in black versus white Americans.
“The best way to treat high blood pressure is to prevent it from occurring in the first place,” said Dr. Howard.
The REGARDS study includes more than 30,000 black and white Americans, approximately half of whom live in the Stroke Belt, an area in the southeastern United States where the rate of stroke mortality is higher than the rest of the country. Of these, 6,897 participants, 1,807 black and 5,090 white, were analyzed for this study.
In 2016, the NINDS launched a stroke prevention campaign called Mind Your Risks, which is designed to educate people aged 45-65 about the link between uncontrolled high blood pressure and the risk of having a stroke or developing dementia later in life.
Story Source: NIH/National Institute of Neurological Disorders and Stroke. “Diet rich in fried and processed foods linked to increased hypertension in black Americans: Study suggests a change in diet could mitigate increased risk for stroke.” ScienceDaily. ScienceDaily, 3 October 2018. <www.sciencedaily.com/releases/2018/10/181003193936.htm>.
Oct 5, 2018
As World Stroke Day 2018 approaches, we would like to invite you to register your event on the World Stroke Campaign website, by clicking on this button below.
Registration link WSD 2018
SAFE is proud of our member organisations who did tremendous work around World Stroke Day 2017, wholeheartedly supporting the “What’s your reason?” campaign. through use of texts, visuals and other material produced by WSO for this purpose.
We also used the opportunity to convey our own messages based on the Burden of Stroke in Europe Report findings, related to the lack of prevention and stroke awareness campaigns in Europe, as well as the underestimated danger coming from the three biggest stroke risk factors- blood pressure, AF and high cholesterol.
Whether it was a series of lectures like in Cyprus, Portugal, or a book promotion in Luxembourg or sports events that our colleagues from Ireland, Poland and many other countries organised- we showed that raising awareness of stroke was an important topic. Many of our organisations start the preparation for the World Stroke Day long before 29th October. For example, our colleagues from Slovenia started with activities dedicated to WSD as early as September by attending the Festival for the third age and with September’s national gathering, having a stand and giving a free lecture on how to beat stroke, delivered by the vice-president of the Slovenian Stroke Support Organisation, dr. Tatjana Erjavec.
What is your plan for this year? Register your event, put yourself on a map of stroke activists from around the world.
Oct 3, 2018
From the beginning of the Stroke Support Organisation Faculty Tool (SSOFT) project the needs of the members of the Stroke Alliance for Europe (SAFE) has been central to the whole process.
The needs of the people who would use SSOFT, was a focus at the last SAFE Working Conference in Zagreb (December 2018) where half a day was dedicated to gaining insight and feedback from the numerous member who attended. One of the many SAFE members who were enthused by this project and volunteered to be part of the User Acceptance Testing Group was Nenad Nikolić from Moždani Udar, the Serbian Stroke Association.
Nenad has worked as a Medical Technician in a Neurology ward in the General Hospital in Ćuprija Serbia, for the past 15 years where he has worked with many stroke patients over the years. Nenad became an active member of the Serbian Stroke Association due to his own personal experience, when his mother suffered a stroke ten years ago.
We caught up with Nenad at the SAFE Regional Conference in Prague to ask him about his SSOFT experience so far.
When SSOFT was presented at the SAFE Working Conference last year what sparked your interest?
SSOFT attracted my attention as I wanted to see how it fitted with my experience as a medical technician working with stroke patients. I saw the potential for this tool as a valuable resource and therefore I volunteered to become a tester of SSOFT. I also had a strong personal motivation to participate as I wanted to learn more about advocacy to help further develop our SSO’s activities.
How have you found the User Acceptance Testing process?
All in all, testing this tool is a very interesting experience and much can be learned.So far, I have tested four out of six modules and after each testing session I have sent my observations and recommendations to the project team. I have had a lot of ideas and recommendations which I shared with the team and I am pleased to say a lot of them have been accepted. The opinion of the people who test the program is important. Therefore, SSOFT is exactly what should be: a tool “for our members by our members”.
Can you briefly describe SSOFT to those who haven’t used it yet?
SSOFT is an e-learning toolkit for organisations that deal with stroke. SSOFT aims to provide the necessary information for effective local and national campaigns to improve prevention, recognition, treatment and care of stroke. SSOFT will have six modules which are in smaller sub-sections which displays the information on slides, like a PowerPoint presentation. The modules also have a lot of video materials where members of stroke organisations or stroke survivors share their experiences, which is certainly of great help. The video clips are in English and are easy to understand. There are also activities and quizzes which keeps things interesting. It is very interactive.
What is your overall impression of SSOFT?
My general impressions are very good, and I find that the entire interface simple and easy to use. The text is easy to read and see, there is also sound that follows the text (a voiceover in English language). All audio-visual content is understandable and can be easily used by people who have suffered stroke, which is very important.The language used is simple, without too many medical terms, so non-medical worker will understand it. As far as content is concerned, it’s very useful and it has plenty of valuable information (from what it takes to start the local Stroke Support Organisation, to recommendations for successful campaigns). From what I have seen so far, I can say that the content “hits the target”.
Would you recommend other people use SSOFT?
Of course! If you are stroke survivor or carer or member of an organisation which deals with stroke, SSOFT is a valuable resource with plenty of useful information about how to advocate for either better stroke prevention or treatment or long-term care.
Oct 3, 2018
Cells and platelets stick inside arteries, increase risk after initial attack
The original article was first published on ScienceDaily.com
Doctors have long known that in the months after a heart attack or stroke, patients are more likely to have another attack or stroke. Now, a paper in the Journal of the American College of Cardiologyexplains what happens inside blood vessels to increase risk — and suggests a new way to treat it.
Heart attacks in mice caused inflammatory cells and platelets to more easily stick to the inner lining of arteries throughout the body — and particularly where there was already plaque, according to the paper. As a result, these sticky cells and platelets caused plaque to become unstable and contribute to blood clots that led to another heart attack or stroke.
But the study found treating mice that had experienced a heart attack or stroke with the powerful antioxidant apocynin cut plaque buildup in half and lowered inflammation to pre-attack levels.
“Knowing that newer forms of antioxidants such as apocynin can lower the risk of a second heart attack or stroke gives us a new treatment to explore and could one day help reduce heart attacks and strokes,” said the paper’s corresponding author, Jonathan R. Lindner, M.D., a professor of cardiovascular medicine at the OHSU School of Medicine.
Lindner penned the research paper with colleagues from OHSU, Scripps Research Institute and Bloodworks NW.
The researchers discovered the sticky cells and platelets by using unique forms of ultrasound imaging they developed to view molecules on the lining of blood vessels.
This research could help explain why the recent Canakinumab Anti-inflammatory Thrombosis Outcomes Study, also known as the CANTOS clinical trial, found an anti-inflammatory drug already approved to treat juvenile arthritis also reduced the risk of a second heart attack in trial participants by 15 percent.
Lindner and his colleagues are further studying how the relative stickiness of remote arteries affects the risks for additional heart attacks and strokes and are also evaluating new therapies beyond antioxidants.
The study was supported by the National Institutes of Health (R01-HL078610, R01-HL130046, R01-HL091153, R01-HL11763, HL42846, HL78784), NASA (grant 14-14NSBRI1-0025) and the Swiss National Science Foundation.
Story Source: Oregon Health & Science University. “Antioxidant reduces risk for second heart attack, stroke: Cells and platelets stick inside arteries, increase risk after initial attack.” ScienceDaily. ScienceDaily, 4 September 2018. <www.sciencedaily.com/releases/2018/09/180904164639.htm>.