Progressive MS Alliance – MS stories from across the world
Find out about the lives of seven people affected by progressive MS.
Last updated: 2nd November 2021
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The International Progressive MS Alliance
More than one million people live with a progressive form of MS. Progressive MS is a type of MS that gets worse over time and can affect many areas of life such as vision, mobility, cognition, ability to work, and independence. Learn more about progressive MS.
Despite advances in other forms of MS, the discoveries that will lead to treatment for progressive MS have remained stubbornly elusive.
This is where the International Progressive MS Alliance comes in. The Alliance was established in 2012, by six founding members: MSIF, and the MS societies of Canada, Italy, the Netherlands, the UK and the USA, who made a joint commitment to speed up the development of treatment for progressive MS by removing scientific and technology barriers.
It is an unprecedented global collaboration of MS organisations, researchers, health professionals, the pharmaceutical industry, companies, trusts, foundations, donors and people affected by progressive MS, working together to address the unmet needs of people with progressive MS ─ rallying the global community to find solutions. Existing to accelerate the development of effective treatments for people with progressive forms of MS to improve quality of life worldwide. Our promise is more than hope, it is progress.
Progressive MS stories from across the world
Below are the moving stories of seven people affected by progressive MS. Listen to Najia, Caroline, Vanessa, Alexis, Frederico, Jon and Cory to hear about how progressive MS changes the lives of those affected.
Find out how the Alliance is giving them hope through its global mission to accelerate the development of effective treatments for people with progressive forms of MS, and rallying experts around the world, working too ensure that people with progressive MS can live fulfilling lives.
Najia from Morocco has been living with MS since 2014. When she was diagnosed, she worried about going from the dynamic woman who did everything for her family, to the one needing assistance.
‘I want something that’s going to mend my nerves. Those nerves currently can’t be treated by existing treatments. We need to make sure there’s something for the future, for me and others like me.’
Caroline from the UK was diagnosed with secondary progressive MS eight years ago. For over a million people like Caroline, progressive MS can affect all parts of daily life.
‘Even daily tasks can be quite frustrating. The simple task of washing and drying my hair can be so exhausting that I have to lie down and rest afterwards.’ – Vanessa, Australia
Vanessa has been living with MS since 1998. For many years after her diagnosis, she didn’t tell anyone about her MS, but her life changed significantly.
I was looking forward to hiking in the mountains like my dad had hiked with me, and that’s out of the question with my little boy. I had looked forward to guiding his hand on woodworking tools like my dad guided mine… Never happened.’ Alexis, Ireland.
Alexis has lived with primary progressive MS for 28 years. He has missed out on experiences with his family that he always wanted.
‘When I was diagnosed with multiple sclerosis, suddenly the ground fell out from underneath my feet. It was like my life had been put in a freezer.’ – Frederico, Italy
‘Progressive MS upended our lives.’ – Jon, USA
When Jon’s wife Jean was diagnosed with progressive MS, their lives changed forever. Watch Jon’s story and hear why the International Progressive MS Alliance is so important to him.
‘There’s so much work to be done…What I have realised is you’re not going to be able to do it all on your own and this is where the International Progressive MS Alliance comes in.’ – Cory, Canada.
When Cory was diagnosed with MS in 2005, he was just starting his family and career. He and his family decided they were going to focus on resilience, perseverance and being strong advocates. Years later, there is still work to be done.
Click here to learn more about the International Progressive MS Alliance.