An interview with Dee Ecklund on Multiple Sclerosis Advocacy on August 14, 2024.
Biography
I was diagnosed with MS in 2002. About 10 years later I was diagnosed with drop foot, and another 3 years after that I hyper-extended my knee. I’ve been actively searching for humane type bracing options to help with my mobility issues since 2017.
Can you tell me more about your Advocacy?
I am able to walk, I just have a couple of quirks (drop foot & hyper-extended knee). The custom rigid type braces have not yet helped and are so uncomfortable I very rarely use them. I have experience with over 20 braces and I’m still searching for my “forever brace”
During this search, when I learnt that in the US, a brace is defined as being “rigid” I realized we need a way of finding non-rigid type options. More options for ALL of the people ALL over the world who cannot tolerate the big, bulky, uncomfortable, rigid options,
I have started a mission of hope via LinkedIn to help spread awareness and to hopefully inspire people to design a new generation of mobility devices, especially for those that need braces for life.
What is your passion and how did you get involved in MS awareness and hope for a cure?
Until there is a cure for MS, we need to help not just people with MS, but everyone struggling with their mobility, find more options for mobility braces/devices.
What type of goals do individuals with MS have when seeing your Advocacy?
Enjoy more independence and the ability to participate in more activities and events.
What effect can your Advocacy have on an individual with MS?
Enjoy more independence and ability to participate in more activities and events.
What would you like to see as a future goal for your Advocacy?
More bracing type devices that are comfortable, non-rigid, not bulky, non-invasive, and discrete. A bonus would be to have waterproof options for showering safely.
How does this also assist the caregivers?
If we had more effective bracing options, every activity would be safer. Activities that involve standing or walking could be ours again!
How can someone get in touch? What is your website?
Via LinkedIn: linkedin.com/in/dee-ecklund-9572b32a6
How can others also become advocates for awareness?
By helping me spread the word that we need more bracing options for the next generation!
In your opinion, what is the key to effective advocacy?
Communication.
How can we better fundraise to support a cure for MS?
I wish I knew. But until there is a cure, I would love more support for the symptoms.
What other activities do you undertake to help improve and support your daily living Eg exercise and alternative remedies?
PT and OT
Why should people who don’t have MS care about this?
Mobility issues can affect everyone with no warning regardless of health. Athletes hyper-extend their knees all the time. It would be a blessing if everyone could find a comfortable option to participate in life’s daily activities.
Have you had any family members or relatives affected by MS?
No
If you had one song that would tell us more about you or represent your life, which song would it be?
My Way by Frank Sinatra.
If you had one final statement or quote you could leave for the MS community, what would it be?
Have HOPE