Matthew Brown & Emily Youngblood Roberts Fund

About Emily and Matthew

Just about the time Emily and Matthew began enthusiastically embracing their lives as independent adults, DM struck. In the fall of 2016, Emily Youngblood was planning a wedding and new life with her then fiancé Jon Roberts, as well as building her horse training business, Equine Edge, on the big island of Hawaii. Gifted with a heart for horses, she has become known as the horse whisperer in her community. She also loves to tandem surf with Jon and hike and camp with their dogs. This is the life Emily loves and strives to maintain.

Across the ocean, her cousin Matthew Brown was settling into his new job as an ad manager in the mobile gaming industry, enjoying his life in San Francisco. It's rare to find someone as enthusiastic about his work and industry as Matthew. He describes Kongregate as a "truly fantastic company" and loves the work - monetizing mobile games by optimizing in-game ads. He also loves cooking for family and friends. Gifted at public speaking and at ease with a microphone in hand, Matthew often entertains the idea of doing stand-up comedy. This is the life Matthew loves and strives to maintain.

Shared Symptoms

In the midst of pursuing their dreams, both Emily and Matthew began experiencing alarming health complications. During the 2016 holidays when their families were together, Emily and Matthew discovered they had similar odd symptoms. So began their unplanned medical journeys that included multiple trips to specialists, eventually leading them to a convergent, devastating diagnosis of myotonic dystrophy.

About Myotonic Dystrophy

Acting as a sort of sleeper gene, adult-onset Myotonic Dystrophy (DM) is generally not discovered until disease symptoms present in seemingly healthy young adults like Emily and Matthew. For reasons not yet understood, the RNA of those carrying the gene begins to transcribe repeat expansions, which causes the RNA to become unstable, disrupting the function of other genes and multiple body systems. It is a devastating disorder for individuals and families and much research is needed before a cure or treatment can be established.

For more information about DM and how it affects the body, please visit the Myotonic Dystrophy Foundation:

Start Here: Disease Overview, Videos & FAQs
Interactive Body Systems Tool

DM comes with daily struggles, some pain, discomfort, and lifestyle modifications. Both Emily and Matthew are committed to facing this disease with courage, tenacity and a good amount of humor. Matthew describes it as "an all consuming disease, as there are few moments in the day when I'm not reminded of it." It is common for his tongue to freeze up, making speaking impossible. Foot and leg cramps make walking difficult. The muscles in the stomach and heart don't work as they should, bringing pain and more complications. The inability to fall asleep and stay asleep brings an exhaustion that is frustrating, to say the least. DM also requires numerous doctor visits and Matthew estimates that in just 9 months, he will have been to 40 appointments. In his low-key and humorous manner, Matthew describes this as "not ideal."

Your Support in Action

The Matthew Brown & Emily Youngblood Roberts Research Fund is helping MDF accelerate the search for therapies and a cure for myotonic dystrophy by:

• Seeding early-stage drug development efforts in academic labs and biotech companies
• Expanding the pool of committed myotonic dystrophy scientists through fellowship awards
• Supporting a myotonic dystrophy-specific drug testing lab to enable industry to identify potential therapies more quickly
• Improving care for patients like Matty and Emily by disseminating the first-ever clinical care guidelines to physicians and specialists who treat them

Inspired and Inspiring

"I am one of the more fortunate ones because in my case, myotonic dystrophy was caught early. For some people, it takes months or years. Also, I have an amazing family, with a support system in place. My symptoms aren't as bad as children born with myotonic dystrophy.

In the grand scheme of things, I'm pretty lucky. I just deal with some pain and discomfort, but the younger kids, the ones born with it, can be severely disabled."

"I would say that this is not just about helping Matthew Brown and Emily Youngblood Roberts – but it's about saving and improving the lives of ALL people with myotonic dystrophy."

-- Matthew Brown, August 25, 2017