91ֱ��

When Congress was considering a law enabling people with Amyotrophic Lateral Sclerosis (ALS) to receive experimental treatments, Joanie Carmichael met with lawmakers to persuade them approve the measure. When families dealing with ALS contacted her, she gave them pointers for navigating the neurodegenerative disease. And now Carmichael, at age 59, is pushing forward on a university degree that will allow her to pursue a professional career focused on ALS advocacy.

She is doing so with the help of Pillars of Strength, a 91ֱ�� of Maryland Global Campus (UMGC) scholarship that provides full tuition to caregivers of servicemembers and veterans.

Carmichael ran across the scholarship while clicking through the UMGC website. After moving through several steps in the process, she was asked to take part in a Zoom call.

“I was extremely nervous. I thought it was a final interview for the scholarship. They said, ‘We have just one question: Will you accept the scholarship?’” a thrilled Carmichael recalled. She is already midway through a Bachelor of Health Services Management at UMGC and the scholarship will lift some of the financial burden on her household.

Since her husband James, a retired Army veteran, received an ALS diagnosis in 2020, Carmichael has split her time between caregiving and advocacy work. She recently paused the latter because her husband’s illness has progressed and she needs time for her degree program.

“My husband and I have to do as much as we possibly can with the time we have,” she said. “Of course, if this journey takes the path I don’t particularly care to think about, and I haven’t finished my academic journey, this scholarship allows me to continue studying regardless of our household income. “It allows me peace of mind without any interruption.”

A UMGC degree will equip Carmichael for a professional career, putting her back in the workforce after a more than 30-year absence, during which time she raised five children, including two active duty sons, one in the Navy and the other in the Army. The couple’s oldest son also served in the Navy. Their youngest daughter works with Veteran Affair’s direct program as a caregiver for her father; their oldest daughter also assists with his caregiving.

“My calling may be in advocacy for veterans. I’m not opposed to advocating for nonveterans or civilians, but it has been a journey to advocate for veteran benefits for my husband and I know people who are not as analytical or persistent as myself might accept ‘no’ when they should keep pushing,” Carmichael said. “Also, this disease has no cure. They’re doing some research but not nearly enough, not nearly as much as other diseases such as cancer.”

In addition to serving as an advocate for the Accelerating Access to Critical Therapies for ALS (ACT for ALS) bill, Carmichael has lobbied on behalf of the Elizabeth Dole Home Care Act, which expands funding for home and community-based services for veterans and caregivers.   

Before she married, Carmichael had aspirations of becoming a nurse. She enrolled at a community college in 1997 with that goal in mind but unexpected health challenges forced her to withdraw from school. After all these years, she is happy to be back at the books.

“I love learning at this age,” she said. “I’m more focused and I understand that what I am doing is extremely important. I’m going to make it work—and I hope I might inspire others.” 

And that federal legislation that Carmichael lobbied to get passed? On Dec. 23, 2021, President Joe Biden signed the ACT for ALS into law.