Meet Matt, an advocate for transparent and effective communication

Have you had a chance to admire the stunning new graphics in the latest editions of the ACP newsletter email?  This month, we’d like to introduce you to the creative mind behind them.  Matt Allen enjoys doing freelance graphic design work, which is one of the many roles he takes on at the Accelerated Cure Project.  Take a moment to get to know him!
Matt is originally from, and currently resides in Southern California.   He took business classes at a local community college until 2010, when his schedule became overwhelming due to his MS diagnosis.  He currently does freelance graphic design and writing.  In his words, “Freelance work gives me the most flexible schedule for the ups and downs of MS.”  In his free time, he likes to read, watch old movies, and he enjoys gardening.

Matt in front of mountains

I try to keep things calm and simple in life. I love music and definitely spend more time wearing headphones than I spend without them.

Matt was diagnosed with MS in 2010, when he was 20 years old.  He shares, “Before that my life was very different.  I was big into art (specifically drawing, a little sculpting, a little painting, and of course writing) and I really enjoyed being outside whether that meant camping, hiking, or dirt biking…. My very first MS symptom was waking up with numbness in one foot and pins and needles in the other.  Over the next couple of weeks both of those symptoms spread up to my shoulder blades.  Next was my vision (optic neuritis), balance, weakness, foot drop, and so many other little symptoms… The most prominent part of MS in my daily life now is fatigue which is, in my opinion, hands down the most debilitating MS symptom. Between that and my balance I’m obviously not as active as I once was.”

I’ve been on Copaxone, Rebif, Tysabri, Aubagio, Zinbryta, Lemtrada, Ocrevus, and finally Kesipmta. I guess you could say we were having a hard time getting my MS under control.

Matt getting an infusion

Immediately after his MS diagnosis, Matt started blogging to track his progress and meet others in similar circumstances.  Through that and social media, he has connected with many other people around the world who are also living with this disease.  Both have deepened his understanding of the unique experiences and challenges that people with MS face, as well as the strong sense of mutual support within the MS community. “I quickly decided that I was in a unique position to try to turn my circumstances into something positive that could help others.”

Matt quickly saw how social media helps people with MS and similar conditions connect and build a sense of community.  He leverages this awareness to oversee iConquerMS’s social media presence and produce its content. 

Matt has been an active participant at the iConquerMS Leadership Summit and plays a lead role in the Next Steps Committee (NSC).  The NSC meets every month to discuss how the initiative will continue to advance the work done at the Leadership Summit.  In Matt’s words, “Most of the people that are part of the NSC, such as myself, are living with MS and therefore have unique insights and experiences to bring to the table when working to constantly improve iConquerMS and its value to the MS community. As this committee has an ongoing goal of trying to improve and grow this initiative, I envision it growing in size allowing more people to focus on more of the little things brought up at the Leadership Summit that we may not otherwise have the manpower to address.”

“My favorite part of participating in the Leadership Summit is getting together and brainstorming with a huge group of people from so many different locations, backgrounds, experiences and areas of expertise.  I love the problem-solving process because it can often involve a certain degree of creativity. The diversity of people attending the Leadership Summit offers a rich assortment of unique ideas for ways to possibly solve problems and overcome challenges that the MS community and iConquerMS may be facing.”

Matt also volunteers as a member of the Engagement Committee, where he contributes his expertise to create and implement engagement strategies aimed at growing the iConquerMS community and enhancing collaboration with its members.  The Next Steps Committee established a subgroup of the Engagement Committee, known as the Building Trust Committee, which Matt co-leads.  This group focuses on identifying potential trust issues within the MS community concerning medical research.  Their goal is to provide accurate information about the research process, addressing any doubts people may harbor and increasing the transparency of iConquerMS.

“Ensuring a trustworthy environment is a priority for me because I personally understand how easy it is to be untrusting of medical research and how hard it can be to shed previously held misconceptions. By actively promoting transparency and information about the research process, we’re striving to strengthen people’s trust in iConquerMS.

What’s your favorite role at ACP?

“My favorite “role” would probably be developing content for social media because I enjoy working on and trying to improve our messaging/communication in ways that people can easily connect with. Plus, trying to fit a message into a tweet with a 280-character limit usually requires a bit of ‘problem-solving’ which, again, I really enjoy.”

What about ACP’s mission inspires you the most?

“To me, the most inspiring part of ACP’s and iConquerMS’s mission is how it enables the research process to start with individuals actually living with MS rather than a random researcher whose priorities may not align with those of the MS community.  I see ACP and iConquerMS as positive forces working to advance MS research for all the right reasons.”

What about iConquerMS makes it such a powerful tool for advancing MS research?

I wouldn’t say that any one feature makes iConquerMS a powerful tool, I would say the very concept of putting people living with MS front and center in the research process is what makes iConquerMS such a powerfully unique tool.

We appreciate Matt’s commitment to keeping the iConquerMS community informed and engaged through his work in social media, and his role in shaping strategic initiatives will help ensure that the voices of those affected by MS are heard and valued in MS research.  Matt’s expertise and insights greatly enhance our mission and we look forward to what we will accomplish as we collaborate with people living with MS, researchers, healthcare providers, and other advocacy organizations (among others) and work together to accelerate MS research toward better ways to diagnose, treat and eventually cure the disease.  Stay tuned!