Elsa is a girl who radiates joy,
it's all about that, her being happy.
Everyone who knows me, and everyone I know, is positive. Everyone wants to live and enjoy life.
Translated from Spanish into English
It's impossible not to think about later in the future.
So, you try to live in the here and now, the present.
I was in a medical profession. And unfortunately, everyone always starts to Google. I already knew: This is ALS. But it took three hospitals and 1.5 years to get the diagnosis.
Translated from Dutch into English
If your hands don’t function, you can’t function autonomously. So, you end up in a care situation. Of course, I sometimes worry about that.
Translated from Dutch into English
Now, some of the small things really matter. When you get the diagnosis, people start to think: Life is not about possessions, but about the simple, small things. Our life is only temporary. So, let’s have fun as long as we can.
Translated from Dutch into English
All your life, you think you’re immortal. And then there is a point where one accepts that you are mortal, and I think from the moment that I agreed to be mortal, things went a little better.
Translated from French into English
As soon as I got my verdict, I decided to fight and tell myself if this happens to me, there is a reason.
Translated from French into English
I'm not afraid to die. I’m afraid of not living anymore. Death doesn’t scare me. It will come when it comes. It’s this degradation that scares me, and inside I find it hard to accept it.
Translated from French into English
ALS: A disorder with a devastating physical and psychological impact
The impact of Amyotrophic Lateral Sclerosis (ALS) is felt around the world by people living with the disorder and their loved ones.
Many people diagnosed with ALS in Europe have had a long and difficult road to diagnosis:
the majority spend approximately one-third of their disease course searching for a diagnosis.
Sadly, the average life expectancy from symptom onset is two to five years.
Each year, a similar number of people die from ALS as are newly diagnosed.
There is only one approved therapy for the treatment of ALS
without a specific genetic marker in the European Union.
People living with ALS face rapid and relentless loss of physical functions, including deteriorating muscle function, loss of ability to move, speak and breathe unaided and eventually, death.
This loss of independence has a devastating emotional impact, not only on those living with the disorder but also their loved ones. In surveys conducted in four European countries, around a third of people living with ALS reported that they experience moderate or severe depression, while nearly half of caregivers showed signs of probable psychological distress.
Sharing the reality of
living with ALS
The devastating and wide-ranging impact of ALS on people's lives is often not well known by the public.
#TogetherForALS aims to amplify the voices of people living with ALS, their loved ones and the community by sharing their stories
“All too often, people living with ALS are thought of as a collection of symptoms. This series of interviews, brought into the spotlight by Amylyx, shows clearly that they are still the same ‘whole individuals’ they were before facing the physical, psychological and emotional impact of ALS.”
“Thanks to the work carried out with Amylyx, we were able to have incredibly impactful stories for our awareness campaign. Broadcasted on TV and social networks, the success of the campaign met our expectations. We benefited from a large audience with the general public.”
“These video testimonies reflect that someone is not alone in the fight against ALS. They clearly indicate the need of peer-to-peer contact between European pALS. Moreover, they bring forward that finding an adequate therapy for ALS is key, and that more has to be done to meet the practical and emotional needs of pALS.”
Together for ALS began as a way to share the experiences of people living with ALS and their loved ones. Supported by patient advocacy groups across Europe, including Stichting ALS in The Netherlands, ARSLA in France, Fundación Luzón in Spain and EUpALS (European Organization for Professionals and Patients with ALS), partnered with Amylyx.
Together for ALS is continuing to collect stories to raise awareness, share the devastating consequences that people living with ALS and their loved ones face, and inspire others to feel empowered to share their stories as well.
How could you participate in the campaign?
#1
If you or someone you know is living with ALS and you would like to share your story, contact your local patient advocacy group or EUpALS
#2
If you are a patient advocacy group and would like to get involved, contact us via email using info@amylyx.com
Hear personal stories from the ALS community*
Stories from Spain
Stories from the Netherlands
Stories from France
*Some people featured here have passed away since sharing their stories. This serves as a memorial to them, and recognition for those still with us.
Amylyx’s commitment
Amylyx is committed to supporting and creating more moments for the neurodegenerative community through the discovery and development of innovative new treatments.
It is our mission to end the suffering caused by neurodegenerative diseases. Every day we strive for better therapies. We question the unquestioned, always in search of new solutions.
Our science is our humanity. From the individual neuron to the entire neurodegenerative disease community, we strive to enhance our knowledge, identify research opportunities, and grow our relationships to improve the lives of people with neurodegenerative diseases and of their families.
Founded in the U.S. nearly 10 years ago, we now have a presence in ten countries including the U.S., Canada and across Europe.
