Finland establishes first Duchenne patient organization
On Benjamin’s first birthday, the Finell family received a phone call from the hospital that not only Benjamin but also their son Oliver (then almost 3) are affected with Duchenne muscular dystrophy. This phone call put their lives upside down. They were not suspecting anything serious behind the small delay in Benjamin’s development. After seeking information online and attending Duchenne Patient Academy, parents Mikael and Krista felt inspired to start their own patient organization.
The journey of Finland’s first DMD patient organization started in March 2017. The diagnosis left the Finell family feeling emotionally lost. Mikael remembers the situation very clearly: “As parents, we didn’t really know where to turn to, and who could help us with the many questions we had”. Trying to find information, Mikael noticed that his country had little information about Duchenne muscular dystrophy. Knowledge that was available, was in a bad state. He and his wife Krista started to seek help online.
Starting a patient organization
“This is how we found out about the World Duchenne Organization (WDO) and Parent Project Muscular Dystrophy (PPMD). We are receiving a lot of help from Nicoletta Madia. She played a big role in giving ups hope for a better future, and Nicoletta inspired us to start our own organization.” Mikael says. “We were really fortunate to participate in Duchenne Patient Academy 2019, getting to know all the wonderful people of the Duchenne community.” After attending this global patient advocacy training in Athens, Mikael and Krista Finell decided to set up their own patient organization, together with Sari Rauma who is helping with the accounting part.
Knowledge and awareness
“We joined the World Duchenne Organization because we want to learn more about creating and running a patient organization. This is something we cannot learn in our own country. With the help of WDO, we want to bring information back home, and make a difference with the tools they provide. So we can make a brighter future for DMD patients.”
The Finell family: Adelia, Krista, Oliver, Mikael, and Benjamin.
After the diagnosis
Oliver and Benjamin are active boys, the disease is not slowing them down. “As any boy their age, they love playing with their car and truck models every morning. Sometimes they even sleep with them!” says Mikael while smiling. “In the summer, they love to swim and play in the water, and in the winter they are riding the sled and build snowmen and snow caves. They like helping me with little choirs around the house. It’s giving them a sense of importance. Our rule is: Family comes first, and we do everything together.”
Access to treatment and care
There are many treatments which are old or outdated, and need to be upgraded. This is why one of the goals of DMD Finland is to upgrade the standards of care and treatment regarding DMD and BMD. Mikael illustrates: “Take for example Ataluren. We have contact with parents of children with non-sense mutations. They are frustrated that Ataluren is still not approved in Finland, despite several Finnish Pharmaceuticals Pricing Boards processing this.
Clinical trials
Next to this, we have parents who wish to participate in clinical trials. They don’t know how to find one that their boy is eligible for, and how to decide which one they wish to participate in. DMD Finland works in providing them with information about the trials, and guidance on how to apply.
Connection
We’re starting to cooperate with Neuromuscular Specialists and the Finnish Neuromuscular Association. They are now guiding newly diagnosed patients to us if they have questions and want support. We’re also connecting patients and parents and motivate them to make a difference. We gain advice on how things go in Finland regarding laws and regulations.
We’re glad to participate in workshops and trainings to get more knowledge to Finland. Many adult patients have contacted us, asking if we can arrange a peer support meeting. We’re working on this right now. By doing all of this, we want to give the best possible and happiest life to everyone affected by this disease.
COVID-19
Mikael doesn’t let the current emergency situation holding him back from connecting the Finnish Duchenne community. “COVID made our plans a bit more difficult. However, we try to participate in webinars, so we can arrange meetings once this is over. We keep looking for ways to see and connect to each other.
Next steps
“Our organization has now connected with a specialist in Finland, which we can ask for advice. We are hosting webinars about life with DMD in Finland with other patients and parents. I’m happy to be able to provide support, and give the feeling you’re not alone with this disease.” Mikael concludes “With the help from WDO and the Finnish association,
we can make a difference in the country, and get Finland involved on a global level.”
The DMD Finland Team
Mikael Finell – chair
Krista Finell – vice chair
Sari Rauma – accounting
Duchenne Patient Academy
This global patient advocacy initiative was formed by Duchenne Data Foundation to create a broader and deeper understanding of Duchenne Muscular Dystrophy (DMD) and coordinate the global advocacy strategy of the community. This meeting can be attended by Duchenne advocates. For more information or inquiries, please contact the DPA secretariat.
