Thursday, November 29, 2018

Global Burden of Disease Brain Summit

Left to right: Bill Carrol, WFN, Valery Feign, AUT,
Valeria Caso, ESO, Michael Brainin WSO
WSO President Prof Micheal Brainin was in New Zealand alongside global neurology leaders attending the Global Burden of Disease Brain Summit. Hosted by Auckland University, The Lancet-Neurology and the Global Burden of Disease Working Group from Washington University, the event shared the latest GBD data across a range of brain diseases around the world.

Opportunities to collaborate in particular to address the educational and training needs of clinicians in Africa and other developing regions were discussed with the WFN President Bill Carrol. 

Tuesday, November 20, 2018

Members of South African SSO are #UpAgainAfterStroke

Congratulations to World Stroke Organization SSO member, Helderberg Stroke Support Group (HSSG), as it prepares to celebrate its 25th anniversary on 23rd November.

The SSO recently carried out a survey with its members and asked them to rate the impact their attendance at HSSG community groups had made on their lives. This could be physically, mentally, emotionally or in terms of overall improvement in speech, language and general function after their stroke.

The results from the survey are very positive, with 79% of people stating that the HSSG has been very helpful, 14% helpful and 7% moderately helpful.

Comments from group members show just how much the SSO helps stroke survivors in the town of Somerset West, in the Western Cape, to get Up Again After Stroke:

I was very weak when I came here. I was also trapped by low self-esteem. I have learned a lot and I am no longer dependent, I can do a lot more for myself – it’s very beautiful.

The exercises help me to get up every day.

The group keeps you fit and it means that you can do a lot more for yourself because of the exercises.

Thank you, I can now do things for myself.

It helped me a lot. When I joined the group I could not do anything for myself -
it has helped my fitness. I am very happy.

I feel so much better since I joined the group because I no longer feel frightened and I can stand on my own legs.

The group is a good foundation for those who are not fortunate enough to get private help. It is good not just for physical recovery, but for mental recovery as well.

After 25 years and with such positive feedback from members, HSSG is still striving to improve the service it provides.  The group was fortunate to receive funding from the DG Murray Trust specifically for training for its assistants, and they recently attended training on transfers, wheelchair dexterity, mobility aids and assisting stroke survivors with walking.

Congratulations Helderberg Stroke Support Group!

Saturday, November 17, 2018

Thank You For Supporting World Stroke Day 2018

This year World Stroke Day on the October 29th, was firmly focused on life after stroke. On social media, in the press and and at 194 events spanning 61 countries, stroke survivors caregivers and professionals got together to raise visibility of stroke, share their experiences of getting #UpAgainAfterStroke and build on the ground political commitment to action on stroke prevention, treatment and support.

Our World Stroke Day campaign aimed to show that a meaningful life after stroke is possible and that with the right care and support people can and do get up again. 

We think our members, supporters and partners left no-one in any doubt that the 80 million stroke survivors around the world have the potential to move mountains.

World Stroke Day by Numbers

  • 170 million online campaign reach
  • 84 million potential media views
  • 194 registered events
  • 61 countries
  • 112,000 campaign web visits
  • 11,500 toolkit downloads
  • 157K reach on Facebook

The campaign isn't over, you can continue to share our resources and take action through the year. We'll also be running a series of webinars highlighting key issues in life after stroke - watch this space!

Wednesday, November 14, 2018

The importance of building alliances to develop stroke support in Mexico

Sandra Rosellini Ochoa from World Stroke Organization SSO member, Asociación Nacional Contra el Infarto Cerebral, A.C. (ANCIC), talks about her experience of stroke and setting up an organisation.

I was inspired to get involved in stroke support because I had a massive stroke. Stroke
support in Mexico is very weak, with very little information. As a stroke survivor I realized that no one was talking about stroke, so my husband and I started a fund to see if we could get enough money to start an association. It took us many years of personal savings and investigation before we could begin the association.

The outcome today is that we have an association legally recognized by the Mexican Government as a nonprofit association that benefits all Mexicans. We sustain our project ANCIC through our personal financial commitment as it is so important for our fellow Mexicans. Stroke survivors and their families have been very grateful for the information we can provide at their moment of crisis, as well as preventive written material and our website. As a stroke survivor I know that you do not necessarily understand the gravity of what you just experienced and your family is devastated.

We first approached doctors, and what we found is they have no money, so we went to the medical associations, and they have no money. We went to the government and they have no money. The way forward was an alliance with the National Stroke Association in the USA. There we found a support through a joint alliance because they had very little material in Spanish. We chose 16 pieces of their information to translate, taking in the consideration which themes were the most relevant in Mexico. We presented our written material to the Instituto Nacional de Neurología y Neurocirugía in Mexico, which approved the translation.

Later on we approached Fundación Carlos Slim de la Salud, as they did not have information about stroke, so now we also have an alliance with them. Now that we have published materials for doctors, survivors, medical community and their families, they have all been very grateful and we hope that turns into future donations to keep our work up to date.

My husband, my five daughters and my friends have helped in my recovery. They did not understand what a stroke was and their fear kept some of them from investigating how to reduce their possibility of a stroke. During my time in hospital a member of my family was with me every single day. All of my friends were told to write letters, cards and send pictures so I could remember my past life. I received flowers gifts and calls, I was never forgotten and I have still have all those cards and letters from 22 years ago. They kept me focussed on starting an association.

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