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By Matthew Santamaria (msantamaria@hdsa.org)

Young people inspire to make a difference in this world. People go away to college to find themselves to see what they want to do in life. For 20 year old Mia McCrumb, she wants a make a difference and have people join her in that difference.

Mia is from Lakeview, Michigan. When she was a sophomore in high school, her mother was diagnosed with Huntington’s disease (HD). This is a fatal genetic disorder that causes the progressive breakdown of nerve cells in the brain. It deteriorates a person’s physical and mental abilities during their prime working years and has no cure.

This emotionally took an effect on Mia. She lost her grandmother to the same disease. Her aunt is currently in a care facility as the pain of going through this disease again must have been tough for a young person to handle. Thankfully, her mother’s progression has been slower compared to the rest of her family.

Symptoms usually appear between the ages of 30-50 and worsen over a 10-25 year period. The symptoms of Huntington’s disease are described as having ALS, Parkinson’s and Alzheimer’s – simultaneously. These include personality changes, mood swings, forgetfulness, impaired judgement, unsteady gait movements, slurred speech, difficulty swallowing, and significant weight loss.

“It hasn’t hindered my mom’s bright spirit, something that I’d like to think she has passed on to me,” said Mia.

As Mia knew, she was in danger of one day having this disease. Each child of a parent with HD has a 50/50 chance of inheriting the faulty gene that causes Huntington’s disease. Today, there are approximately 30,000 symptomatic Americans and more than 200,000 at-risk of inheriting the disease.

With knowing that she could be at risk, she wanted to make a difference in the HD Community. In 2016, she hosted a HD event at Lakeview High School where she helped raise over $1,500 for HDSA. Once she graduated high school, she was accepted to the Ross School of Business at the University of Michigan. Mia is interested in consulting and non-profit work. After her first year of college, she wanted to make a difference on campus and start a new club.

“I realized that among the many organizations and communities on campus, there wasn’t one for those affected by HD, regardless of the fact it is categorized as a rare disorder,” said Mia. Mia wanted to give young people a voice to talk about a disease that is rarely talked about in the media. She and Rian Ratnavale would form the Huntington’s Disease Awareness Association (HDAA). This a club for the University of Michigan that is looking to help raise awareness and funds for HDSA as well as provide a voice for the younger generation. HDSA’s Great Lakes Region has assisted her along the way.

“In my sophomore year of college, I decided to start my own club that focused on HD awareness, funding, and community,” said Mia. “Throughout this process, I have been lucky to have Deb Boyd as a mentor and a friend. She has connected me to the vast amount of people who are all trying to accomplish the same goal: finding a cure.”

Deb is HDSA’s Great Lakes Regional Development Director. The chapters that she works very closely with are Illinois, Northeast Ohio, and Michigan. She has praised Mia for taking the initiative to form the club.

“Mia is a bright and ambitious individual who displays a high degree of integrity and responsibility,” Deb explains. “I look forward to working with her on a Team Hope Walk in Ann Arbor, Michigan.”

For Mia, she can be doing other activities in college. She does not have to worry about what might happen in her future. She could live in the moment and does not have to worry about the future.

However, that is not Mia McCrumb.

“Within Huntington’s Disease Awareness Association at the University of Michigan, we aim to involve members with Huntington's Disease Society of America and its local chapters in all its efforts, as our mission is similar,” Mia explains. “Our purpose is to provide members ways to be involved in finding a cure for HD. Through our organization, members will be able to showcase skills and take part in leadership and volunteering activities, growing a strong membership base for others to rely on.”

She is encouraging young people on campus to have a voice and to know that you are never alone in this battle. Mia is an example of young people in our society that want to make a difference. Currently, she has 15 members and is looking for more.

“It has been a wonderful experience working with this community alongside my peers, and as the current president and co-founder with Rian Ratnavale, I am excited to see how far reaching this club will be.”

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Huntington’s disease is a fatal genetic disorder that causes the progressive breakdown of nerve cells in the brain. It deteriorates a person’s physical and mental abilities during their prime working years and has no cure. Each child of a parent with HD has a 50/50 chance of inheriting the faulty gene that causes Huntington’s disease. Today, there are approximately 30,000 symptomatic Americans and more than 200,000 at-risk of inheriting the disease. The symptoms of Huntington’s disease are described as having ALS, Parkinson’s and Alzheimer’s – simultaneously.

The Huntington’s Disease Society of America is the premier nonprofit organization dedicated to improving the lives of everyone affected by HD. From community services and education to advocacy and research, HDSA is the world’s leader in providing help for today and hope for tomorrow for people with HD and their families.

​To learn more about Huntington’s disease and the work of the Huntington’s Disease Society of America, visit www.HDSA.org or call 1(800)345-HDSA.

This is a story featuring a personal experience with Huntington’s disease. If you would like to have your story told please contact Matthew Santamaria at msantamaria@hdsa.org