The Evelyn Nicholson award recognises people who are, or have been, volunteer caregivers to people with MS. Nominees have all demonstrated outstanding commitment and devotion.
The award honours individuals whilst recognising the importance of volunteer caregivers around the world.
The 2016 winner is Bente Sneis from Norway
Bente was awarded the prize at an event to celebrate the 50th anniversary of the Norwegian MS-Society. Jette Bay, the vice chair of the Danish MS Society and member of MSIF’s People with MS Advisoray Committee, presented the award.
In addition to the prize from MSIF, Bente recieved 5000 NOK from the Norwegian MS Society, and free tickets for ten persons to Kattegatsenteret in Denmark from the Danish MS Society. She plans to use the prize money to organise a group holiday for people with MS.
Reid Nicholson who helped to establish the award said: “Please pass our congratulations on to Mrs. Benta Seneis and tell her how important caregivers are in this fight. The hard cold reality is that MS takes as much of a toll on the family as it does on the person diagnosed. This is a truth that gets taken for granted and we can never repeat it too often.”
Bente met her husband Øyvind 40 years ago, two years later he was diagnosed with MS. They have three children and three grandchildren and live in Øyvind`s childhood home. As Øyvind’s MS has progressed he has needed more help to manage everyday life. Bente has been his sole caregiver, helping with day to day tasks and working to make their home accessible.
As well as supporting her husband, Bente has been the chairperson of ‘Follo’, her local MS support group, for 10 years. She’s been an active member since 1983 when she and Øyvind helped to establish the group. She’s also been the chairperson of a regional group for the last two years.
Bente pours energy into the MS support group. She does everything, from arranging the meetings to baking cakes and running the programme of activities. Once a month Bente holds an informal lunch for newly diagnosed young people. She puts them at ease and provides information, which means they come back and get involved with the group. She also runs an annual MS seminar.
Every year Bente organises a group trip to “Dronningens Ferieby”, an accessible holiday camp in Denmark. Many people with MS find it hard to travel alone, so by organizing these group trips, negotiating prices and acting as tour guide Bente makes holidays possible.
On top of all this Bente is a contact for other caregivers. She offers advice and a listening ear for people in the same situation as herself.
Bente’s unconditional devotion to local work has helped a lot of people with MS and their families, young and old. Both locally and from the national MS-society she is known as a strong woman with a lot of compassion for other people.
There are thousands of people who dedicate their lives to caring for someone with MS, so choosing a winner is always very difficult. This year we had a number of excellent and deserving nominees from around the world:
Amunda van Stenis – Netherlands
Amunda takes care of her husband Dirk who was diagnosed with Secondary Progressive MS in 1987. Amunda has balanced caring for Dirk with part time work, raising their four children (who are now grown up) and chairing the local branch of the MS society.
Amunda organises meetings on research, support groups and social events. She runs a newsletter, events for people who are newly diagnosed and fundraises. She is currently involved in setting up integrated care for MS patients in a local hospital and co-organises holidays for people with MS.
Meenakshi Bhujwala – India
Meenakshi cares for her husband Hormuz who was diagnosed with Primary Progressive MS 25 years ago. When the diagnosis came, Meenakshi gave up her job and chose to work from home and take care of Hormuz and their two small children. She’s been volunteering with the Delhi Chapter of the MS Society of India for 20 years.
Alain Louppe – Belgium
Alain is the loving husband of Josiane, who was diagnosed with MS in 1990 at the age of 38. Alain takes care of Josiane almost 24/7 and everything is done with great tenderness, with joy, with no signs of impatience, bitterness or complaints. He has decided that this is his life and he fully accepts the consequences. This doesn’t mean that he forgets to look after himself. To the contrary, he takes great pleasure in being with his grandchildren and loves gastronomy.
Gary Pearson – Canada
Gary’s dedication to his wife, Joan, has been a huge source of inspiration to everyone who’s encountered him at the Canadian MS Society. Gary supported Joan to establish a local chapter of the society in 1969 and the whole family are still heavily involved with fundraising and managing the chapter. Joan died in September and will be greatly missed, but thanks to Gary’s support her legacy will live on.
Rita Maura Sabino – Brazil
Rita takes care of her daughter Soraia who started having MS symptoms aged just 18. As Soraia’s MS has worsened Rita has become her full time caregiver. Both mother and daughter are heavily involved with Brazilian MS organisation, ABEM, which Rita sees as a favourite hobby rather than a chore.