Evy Reviers serves as the CEO of ALS Liga, our sister organization in Belgium and is a champion in ALS patient advocacy and care. She and her organization stepped up to partner with Dr. Desain and his team that develops NoiseTag brain computer interface (BCI), who won the ALS Assistive Technology Challenge in Dublin this past December. Through this collaboration, patients in Belgium will be able to try out the NoiseTag BCI to optimize its function and usability, thereby making it the best product possible. She sat down with us to give her perspective on ALS assistive technology and care from her vast experience as a leader of a successful ALS organization and from her personal experience as caregiving daughter of her father who lives with ALS.
Tell me about yourself.
I have been working for 10 years as Executive Director / CEO of ALS Liga. Before that I did eight years of volunteer work for the organization. My motivation is that my dad has had the disease for 38 years. As I am only 29 years old, I never knew anything else but ALS in my life. That is the reason I am a driving force for my organization and I advocate for ALS patients.
How did you get involved with Dr. Desain and their NoiseTag BCI technology?
A few years ago, Peter contacted us for the first time. He knew about our organization and our service ALS Mobility & Digitalk that lends assistive devices to ALS patients. He asked us to join an international collaboration to help ALS patients with severe communication problems by offering them their BCI technology. The fact that Belgium and the Netherlands are neighboring European countries is a great advantage for our collaboration. We speak the same language and our offices are only 200 km away from each other.
How do you think Peter’s NoiseTag BCI will impact people living with ALS?
We know that ALS patients that are in the last stages of their disease may have severe communication difficulties. The eye gaze systems that are currently available have their limits. For example, they can no longer be used by a lot of patients that are taking medications like morphine, since that alters the shape of the pupil (called miosis). That is the reason we want to find better technology that allows ALS patients to communicate, even if they are in the last phase of their disease. Communication is very important. Imagine you know you are dying and you see your family around you, but you cannot communicate with them. Such ALS patients cannot say what they want to do, such as going forward with their lives. They cannot tell others that they love them. It is so hard. You can tell in their eyes that being unable to communicate with their loved ones is frustrating and hurting them.
What are your plans with your partnership with Peter?
After our team won the ALS Assistive Technology Challenge in Dublin, we received a lot of telephone calls asking for our future plans. In the project, we are further developing and optimizing the prototype. Most importantly, ALS patients will co-develop the technology by testing it in real life situations. If selected patients like it, we will bring NoiseTag BCI to the broader community of all ALS patients worldwide.
We are very thankful to The ALS Association and Prize4Life for making this possible. This means a lot for us and for ALS patients. So big thanks to the organizations that make funds available to continue projects like ours. Thank you!
Do you have a message for people living with ALS?
We think it is very important that ALS patients not only collaborate with biomedical researchers but also with engineers, because their research projects can help in changing their lives. Engineering projects will unfortunately not heal them, but they can contribute to a better quality of life. I think it is very important that patient organizations are bridging scientists and engineers who have promising projects, with ALS patients. I think it is a huge step forward that patients are able to talk with people that can solve the problems they encounter. If ALS patients do not talk about their daily problems, it is not easy for professionals to exactly know what problems need to be solved. So keep on talking about ALS related problems, so that solutions can be found.
Tell me about the ALS organization in Belgium and what makes it special?
ALS Liga Belgium has already existed for 21 years. It started very small by an ALS patient and his family who wanted to have a self-help group where people could talk to each other and be away from their problems. Now we run a professional patient organization with 25 co-workers. Only four of them are on our payroll and the rest are highly motivated volunteers.
The service we offer to ALS patients in Belgium is based upon four pillars. The first is to stimulate and finance scientific research to help find a cure for ALS. Second is to help patients directly. The third is that we advocate the rights of ALS patients at institutions to augment their lives in our country. We also created a care center located at the Belgium coast where people go on holidays to have some relaxation and a good time together with their families. The fourth is our lending service ALS Mobility & Digitalk that offers devices for mobility, speech and other ALS related problems. It is important to state that everything is free of charge.
Tell me more about your care center.
Our care center Middelpunt is located at the Belgium coast in the village Middelkerke. Building the whole care center was financed by donations. We also have our fund MaMuze that allows a few families to stay there, relax and enjoy holidays. When a partner of an ALS patient says that it is a little too much at this moment, we try to get them over there to have some quality time together. Afterwards, when they go back to their own home situation, their care giving capacity is higher than before. That is very important to us. We try to contribute not only for the patients, but also the caregivers and the children. I think if you do not have a good family surrounding you, it is not easy to cope with ALS. We need to make sure that ALS is somehow accepted, so that it becomes easier for patients to actually live with the disease, not just have the disease.
What are your hopes for the future of ALS?
It is my greatest hope that a cure for ALS will be found through research in the near future. I see signs that biomedical and clinical efforts to tackle ALS are increasing, both in academic labs and biotech/pharma companies. The ALS Ice Bucket Challenge donations are a huge boost for that, which is amazing. While awaiting the ultimate clinical breakthrough, ALS patients are given hope by the dozens of informal caretakers and professionals that everyday provide support to increase their quality of life. Taken together, my two biggest wishes are a cure for ALS and in the meantime a better quality of life for people living with ALS.
To read more about the ALS Assistive Technology Challenge, please visit http://www.alsa.org/research/als-assistive-technology-challenge.html.
To learn more about assistive technology, please visit http://www.alsa.org/research/focus-areas/assistive-technology.
Read about the other AT Challenge winner – the Pison Technology team here.