Jul 26, 2019
“The life of stroke victims is made difficult in several aspects. It is not only the physical handicap, but also a state of desolation. Family members can act against these troubles with good vigor and vitality, nevertheless a support of the surrounding society would be much helpful.” says Prof. Pavel Kalvach from Czech stroke support organisation Sdružení pro rehabilitaci osob po CMP (Czech Association for stroke victims).
SAFE: What is one issue related to the life after stroke in your country that you think needs special attention?
PK: This is a point, which we should stress in our Czech community: more clubs for stroke victims, for stroke carers, more encouragement in terms of mutual communications, music, creative activities. The people affected by stroke can produce these activities partly on their own, but they need necessarily organizational as well as logistic support. Given such meetings would be established, we could believe, that they could then run already spontaneously. Certainly much enthusiasm is needed to put these intentions into reality.
SAFE: What would be the solution, i.e. what is your organisation’s position regarding this issue?
PK: The Czech Association for rehabilitation of stroke victims provides counselling, provides courses, activates clubs throughout the country, but its reach is by far insufficient. Many healthy, retired people, who could actively contribute to the care of those less happy in their physical health state, ignore the needs of stroke individuals and thereby also their eventual personal pleasure of making good deeds. Our organization should be more proactive in sharing knowledge and encouraging people in those activities. Self-supporting groups could be conceived and we should reach out to put them in life.
SAFE: Please tell us more about your organisation.
PK: The activity that the Czech Association for stroke victims takes the most merit for is the arrangement of summer camps, aiming at rehabilitation. These courses occur in recreational regions of Czech republic. Care of physiotherapists, of medical doctors, psychologists and logotherapists is provided for groups of approximately 40 persons. These courses are financially supported by our Ministry of health, who would cover ½ of the expenses. The other ½ is covered by each person himself. Besides of the medical and psychological individual and group training also cultural activities are organized, like visits to the sightseeing around, or collective singing, or even dancing. People take great pleasure in such course, but the number of those, who achieve to participate is still too low: About 200 per year. If we compare this with the prevalence of stroke victims in Czech Republic, this number make less then 5% of people, who could profit.
Jul 24, 2019
First published on ScienceDaily.com
A new method of evaluating irregular heartbeats outperformed the approach that’s currently used widely in stroke units to detect instances of atrial fibrillation.
The technology, called electrocardiomatrix, goes further than standard cardiac telemetry by examining large amounts of telemetry data in a way that’s so detailed it’s impractical for individual clinicians to attempt.
Co-inventor Jimo Borjigin, Ph.D., recently published the latest results from her electrocardiomatrix technology in Stroke. Among stroke patients with usable data (260 of 265), electrocardiomatrix was highly accurate in identifying those with Afib.
“We validated the use of our technology in a clinical setting, finding the electrocardiomatrix was an accurate method to determine whether a stroke survivor had an Afib,” says Borjigin, an associate professor of neurology and molecular and integrative physiology at Michigan Medicine.
A crucial metric
After a stroke, neurologists are tasked with identifying which risk factors may have contributed in order to do everything possible to prevent another event.
That makes detecting irregular heartbeat an urgent concern for these patients, explains first author Devin Brown, M.D., professor of neurology and a stroke neurologist at Michigan Medicine.
“Atrial fibrillation is a very important and modifiable risk factor for stroke,” Brown says.
Importantly, the electrocardiomatrix identification method was highly accurate for the 212 patients who did not have a history of Afib, Borjigin says. She says this group is most clinically relevant, because of the importance of determining whether stroke patients have previously undetected Afib.
When a patient has Afib, their irregular heartbeat can lead to blood collecting in their heart, which can form a stroke-causing clot. Many different blood thinners are on the market today, making it easier for clinicians to get their patients on an anticoagulant they’ll take as directed.
Please read the full article here.
Jul 22, 2019
Today, on this year’s World Brain Day, SAFE is very proud to share the information of one of our stroke support organisations receiving a project grant from EFNA. The Stroke Association Serbia (“Moždani udar”) is awarded a grant for their #BrainLifeGoals campaign which includes young stroke survivors from Serbia.
Disclaimer: The information below was first published on EFNA website.
The #BrainLifeGoals campaign is an initiative of the European Federation of Neurological Associations [EFNA] that aims to raise awareness of the impact of neurological disorders.
In support of this campaign, EFNA will award grants, of €2,500 each, to projects that best reflect the theme of the campaign, raise awareness and improve understanding of neurological disorder. 28 applications were received from 13 different countries and a wide range of disease areas. The original intention was to award a grant to five projects, but we are pleased to announce that due to the high-level of interest and quality of applications, eight projects have been selected!
The chosen projects are:
‘Brain Conditions Cartoon Novel’ – Association of Patients with Neurodegenerative Conditions (APAN), Romania
‘Raising Awareness of Restless Legs Syndrome’ – European Alliance for Restless Leg Syndrome (EARLS), The Netherlands
‘Empowering People with Neurological Conditions to Realise their #BrainLifeGoals’ – Neurological Alliance of Ireland (NAI)
‘Cavernoma Society Raspberry Day’ – Cavernoma Society UK
‘Stroke Survivors’ #BrainLifeGoals’ – ‘Moždani udar’ – Stroke Association Serbia
‘Aspirations of Hope’ – European ME Alliance, Belgium
‘Stand Up Chemistry for children with learning difficulties’ – Pan-Hellenic Association of individuals with Attention Deficit/Hyperkinetic Disorder (ADHD Hellas), Greece
‘Step Up for Parkinson’s Performance’ – Step Up for Parkinson’s, Malta
For more information, please read the full article here.
Jul 20, 2019
Written by Dr Gabriele Wagner, Project Manager, SVDs@target
The annual General Assembly Meetings are traditionally rotating between the partners within the consortium. For this year’s GA meeting we chose the wonderful city of Paris, where Prof. Anne Joutel at INSERM is based. At the first evening we had a very nice get-together with the SVDs@target participants, who already arrived in Paris and researchers of the Leducq Foundation network, who also work on cerebral small vessel diseases.
On the next day we started in the morning with our working program and every Work Package had the chance to present their current work, results and status. The preclinical partners presented their results of the last months followed by lively discussions about the new gained insights and usually finished with a long list of new experiments, that were elaborated during the discussions. The clinical partners presented the current status of the clinical studies and trial and could present first preliminary data from analyses already performed.
One highlight was definitely the good and motivating news, that recruitment of INVESTIGATE-SVDs is about to be completed within the next weeks. After this fully packed day we let it end in a very cosy Parisienne restaurant, where the participants exchanged also beyond science – as the consortium maintains close collaborations, the participants really got to know each other over the last four years.
The second day started with a very helpful discussion regarding our clinical trial TREAT-SVDs and around noon, Prof Dichgans, Coordinator of SVDs@target thanked again all consortium members for the great work and with an additional thank to Anne Joutel’s hospitality he closed the annual meeting. After a relaxing lunch at the terrace of our meeting venue, the participants made their way back home.
About SVDs@target
Stroke and dementia rank among the most pressing health issues in Europe. Cerebral small vessel diseases (SVDs) have emerged as a central link between these two major co-morbidities. SVDs account for more than 30% of strokes and at least 40% of dementia cases. They encounter multiple distinct diseases that can be separated based on their underlying genetic defects, risk factors, and clinical presentations. Despite this profound impact on human health, there are no treatments with proven efficacy against SVDs.
The new network “Small vessel diseases in a mechanistic perspective: Targets for Intervention in Stroke and Dementia(SVDs@target)” is funded through the European Union’s Horizon 2020 research and innovation programme and brings together top scientists with a wide range of complementary expertise.
The project also includes 3 studies with stroke patients. They are:
ZOOM@SVDs, a high-resolution imaging study to look at vascular function and brain damage
INVESTIGATE-SVDs, an imaging study to assess the blood/brain barrier and vascular function,
TREAT-SVDs, testing the effects of different blood pressure lowering agents on vascular function in patients with distinct SVDs
With the better understanding of small vessel diseases SVDs@target will develop novel therapeutic treatments and finally contribute to the prevention of stroke and dementia.
SVDs@target has received funding from the European Union’s Horizon 2020 research and innovation programme under grant agreement No 666881.
Jul 19, 2019
“In Hungary even nowadays people are ashamed of this disease (stroke), they do not talk about it, they live their life withdrawn, stopping all social activities, and therefore the beneficial rehabilitation opportunities often cannot be brought to their attention. In many cases, the society and the relatives give up on the stroke survivors” says András Folyovich, MD PhD – Board member of the National Stroke Prevention and Rehabilitation League – Hungary.
SAFE: What is one issue related to the life after stroke in your country that you think needs special attention?
András Folyovich, MD PhD – Board member of the National Stroke Prevention and Rehabilitation League
AF: Among the serious consequences of stroke, social reintegration is one of the most important issues, which needs special attention. Stroke survivors recovering with residual symptoms experience that their roles in the society are significantly affected: they can no longer fulfill their former work, and everyday tasks. They may even be forced to resign and thus the economic situation of the families becomes insecure. Significant number of stroke-patients need constant care, and the families face big financial burden. Moreover, family members often must quit their jobs too due to patient care. This emotional and financial burden is very difficult to live with for the affected families.
SAFE: What would be the solution, i.e. what is your organisation’s position regarding this issue?
AF: In our opinion, civil organisations can help a lot in the successful reintegration into the community.
The majority of stroke survivors are discharged into the community. However, after the hospital discharge stroke-survivors and their caregivers are not fully aware of the available further rehabilitation options (physiotherapy, speech and language therapy, stroke support organisations etc.). The situation is worse for those, who are living in the countryside, as there are limited rehabilitation opportunities.
Stroke support organisations can help to give the useful information about the existing support groups, rehabilitation facilities and various equipment. Providing orthotics and transfer- and mobility equipment may assist for patients to be able to leave their homes and to start to fulfill the roles, they used to do before.
Support groups can also be helpful to give a platform, where stroke-survivors can meet and share their experiences and support each other.
In summary, our vision is a world, in which the number of stroke cases decreases significantly and all stroke patients receive a personalized, short and long-term support and care, with successful social reintegration.
SAFE: Please tell us more about your organisation.
AF: Our non-profit civil organisation was founded in 1993 and named ’The National Stroke Prevention and Rehabilitation League’ in 2011. Our mission is the prevention and the rehabilitation of stroke patients through services, personal assistance, information, advocacy and cooperation with health professionals.
Our core activities include:
- organising free health screening events (Stroke screening day at Szent János Hospital)
- editing and issuing healthcare brochures and their distribution (e.g.: physiotherapy exercise booklets to those who live in the countryside)
- providing access to transfer and mobility equipment
- personal assistance and advocacy to stroke-patients and their relatives
- participation in national and local health related events
- recruiting new members
The League’s services and programmes are available for everyone. In order to make our work more effective we also co-operate with other national and foreign organisations and governmental decision-makers (e.g.: Aphasia Club, International, Pető Institute, SZÍV SN Association for heart diseases etc.)
The National Stroke Prevention and Rehabilitation League is currently unable to fulfil their tasks appropriately, due to the lack of funding. The League cannot count on direct financial support either from the government, or from pharmaceutical- and other medical companies.
The reason for this is that traditionally the Hungarian Stroke Association (the medical-professional company) organises the stroke-days and the public awareness events, which means that the financial support arrives there.
The solution may be the revaluation of the National Stroke Prevention and Rehabilitation League and the Hungarian Stroke Association. For which, there is a good chance with the current leadership. In close co-operation, it is necessary to redistribute the tasks. The League should deal with the public issues, while the medical-professional company should be responsible for the professional background. It would be beneficial to contact with the neurological departments of Hungary, and to organise the civil organisations around these departments.
