How Can We Make the MS Journey a Little Bit Easier?
Like you, I have asked myself this very question time and time again. I have volunteered my medical data to research projects hoping to ease others' journey. Joined Facebook groups to share what works well for me in hopes it might help others. Donated to MS Organizations so those in need will receive needed help.
I still felt as though there was more, I could do to help our fellow MS warriors. My search began to find where I could make a real hands-on difference. I searched one website after another until I came upon the National MS Society.
How Did That Change My Vision?
A quick look and I was very impressed with the amount of information and services. One interesting area was titled "Get Involved". I spent some time viewing the several categories for Fundraising, Awareness, Corporate Support, and Advocate for Change which piqued my interest.
The role Activist play was just what I have been looking for. The role was so interesting I called the National Multiple Sclerosis Society to inquire how I can become involved. After discussing the role with the Advocacy Manager, I finally found how I could make a difference.
A New Passion to Change the MS Horizon
Now I have an opportunity to help, improve awareness of the areas which impact those of us with MS. One area which impacts all of us is the continually rising cost of MS medication. Activists reach out to our fellow MSers and other Chronic Disease patients to share their experiences as well with their legislators.
Sharing the impact through your personal story outlines the true need for change. The rising cost of medication not only impacts you, but it impacts your family as well. I know, you are thinking that is the way the world goes around. I understand we are limited to what we can do yet being idle does not encourage the change needed.
How Can We Make a Difference?
With the number of MS organizations, magazines, social media online there are many opportunities for all of us. The National MS Society offers several ways to become involved. As mentioned, you could become an Activist for change. Participate in research, join local supports groups, volunteer to help others find the resources they need.
You could share your story and MS journey by writing an article for MultipleSclerosis.net. We have all learned ways to improve our lives through changes others have shared. They also offer group discussions, become an advocate, or find support for various issues.
You could become involved through Facebook by joining groups which align with your interest. I am a member of several groups providing me an opportunity to share my story. As an example, Tysabri to Ocrevus is a group that shares how their journey was switching medications. Why we switched, good and bad effects of changing.
Patient Advisory Committees
I am sure you are wondering what the heck am I talking about. A long story made short, in January of 2017, I read an article regarding the Ocrevus trial and FDA pending approval. In the end, there was information regarding a Patient Advisory Committee and how to apply if interested. Always looking for ways to make a difference I applied.
Surprisingly, after several emails and interviews, I was accepted. The goal of the committee was to advise on what type of support and information the patient would need. We looked at the research and drug data, website design, type of support patients require. The goal was to make the system easy to navigate, find the support needed, and easy to understand.
After the first design and deployment, the committee meet again in 2018. We looked at the website, services being provided and discuss changes as needed. The group consisted of current, new users, and caregivers. Overall, there were a few enhancements implemented to make the site easier to navigate.
Figure Out What Your Passion Is
You can see there are many ways to make a difference if you are driven to help change the MS horizon. Until the next time, I encourage you all to look within and figure out what your passion is. Together we can help to make the MS journey a little easier for everyone. Feel free to send me a message if you have a topic of interest and thank you for your time.
Have you ever experienced a "weird" symptom and wondered if others with MS have experienced it too?