Miller departing as UI HDSA COE social worker

Tuesday, June 14, 2016


Amanda Miller farewell small
Amanda Miller is departing for a new 
challenge as program director for a 
forthcoming UI mood disorders clinic

By Sean Thompson

Every morning for three-and-a-half years, UI HDSA Center of Excellence Social Worker Amanda Miller has walked past a set of frames hanging on a wall in a hallway on the way to her office in the nearly century-old Medical Education Building. In those frames are pictures and stories of people from around the globe affected by Huntington disease.

Those faces of HD, some very young, some old, many smiling, others fatigued but doggedly determined, serve as a daily reminder for Miller and her colleagues of the people they are working to help. Miller will no longer be walking past those faces on the wall as her time at the UI HDSA COE has come to an end. But when she closes her eyes and reflects on her time here, Miller says she sees the faces of patients, research participants, volunteers and colleagues in the HD community that have meant so much to her.

“Many of those faces remind me of fun, laughter and friendship,” Miller said. “Many remind me of the pain that this disease inflicts on the lives of those it touches. Many give me hope. Their faces are resilient, hopeful and determined.

“I’ll never forget the people I’ve met in this part of my journey. Their names may fade, their stories may become muddled in my mind, but the impact they had on my life personally and professionally will never be lost.”

As of June 1, Miller began a new position as program director for a forthcoming mood disorders center at the University of Iowa Carver College of Medicine. She will work to move research forward and develop programs to help patients affected by depression and bipolar disorder.

Keeping HD families first

Since back when she first started at the UI HDSA COE and her learning curve on HD was steeper than the flagpole on the UI’s iconic golden dome, Miller’s interactions with HD family members have been foundational to her ability to have a positive impact. Hearing the real-world experiences of those affected by HD allowed her to understand the clinical, research and human elements of the disease. Moreover, it allowed her to connect to the community in a way that made her a better social worker.

"The benefit of talking to people that have been through living with HD is that you become more emotionally involved with that individual,” Miller said, “which leads to emotional involvement with the next individual and with the community as a whole, and that informs and motivates the work you are doing.”

Amanda Miller speaking
Miller speaks during the 2015 campus screening of "The 
Lion's Mouth Opens"

 Miller has diligently taken care of the tasks normally associated with social work, such as meeting with patients during the biweekly HD clinic as well as over the phone and by appointment to help them navigate through the various challenges associated with HD. Additionally, Miller also coordinated research visits, worked with colleagues on new HD studies, cowrote medical journal articles and grant applications, planned and participated in awareness events and fundraisers, and was the manager of the UI HDSA COE Clinical Core.

Often Miller’s work involved partnering with the HDSA Iowa Chapter, whether she was helping an HD family new to the state, or hitting the road to educate schools, care providers and others about HD. Over the past year, HDSA Iowa Chapter President Tammy Miller, Vice President Jamie Parish and Miller have held training sessions for law enforcement and other first responders on how to properly respond to issues involving someone with HD.

“There are literally hundreds of police officers and first responders who now know HD and have learned ways to work with HD individuals in order to get the best outcome because of Amanda,” said Tammy Miller.

Amanda Miller has always been able to process whatever problem an HD family member came to her with and work to find a way forward, Tammy Miller says, often relying on resourcefulness and creativity to do so.

“She genuinely cares about the people she is helping and gives her best to do all that she can do to help,” Tammy Miller said. “She doesn’t just give up if the easy answers don’t work. She pulls up her sleeves and comes up with new and different approaches to find the best solutions. She does all this with a genuine and caring heart.”

Continuing to help those affected, buoyed by hope

Amanda and coworkers
Miller with colleagues (L to R) Bella De 
Soriano and Courtney Hobart

Prior to Miller’s departure, she has trained and educated the UI HDSA COE’s new social worker, Angel Dominguez, for the past four months. That luxury plus the continued commitment of Miller’s colleagues leaves the HD community in Iowa well taken care of, Miller says.

“We are really fortunate to be surrounded by professionals who have dedicated large portions of their lives to helping people affected by HD,” Miller said. “I will miss working with colleagues who are as invested in the cause as I am.”

An even greater source of Miller’s optimism for the future of HD clinical care and research is the inherent optimism found within so many in the HD community. For Miller, that sense of hope comes in-part from the quickened pace of HD research advances over the past 5–10 years. For many, Miller says the hope is also organic and independent from any specific precipitating event; it’s soulful.

“I’ve never seen the hope for a better future the same way I’ve seen it with those affected by HD,” Miller said. “There’s something unmeasurable about that sense of hope, but it exists and you can feel it.”

Long after her professional involvement with HD concludes, Miller says she’ll remain connected to the HD community. She is running a half marathon in Hoffman Estates, Ill. in July as a member of Team Run for HD, fundraising and raising HD awareness in a way that allows her to challenge herself physically, mentally and emotionally for a cause she is passionate about.

“I don’t think I could ever walk away from the HD community completely,” Miller said. “I’m far too connected to the families and colleagues I’ve worked with to just walk away completely.”

Those families she’ll be sweating and racking up the training miles for this summer have taught her so much about how to cope with living with a disease. They have shown her even though HD is very hard to deal with, HD families are doing great. There are going to be impossibly challenging days; other days will seem easy and carefree. Both are to be expected, Miller says. It’s okay to do your best during each of those days, and that may involve moments of anger, happiness, sadness, relief and confusion. In those times, when an HD community member is feeling lost, Miller says, that’s what the person on the other end of the phone line (who has often been Miller) at the UI HDSA COE is here for. And that person is happy to have the chance to help.

“Thank you for helping us fight this disease,” Miller said. “Thank you for your volunteerism in research, for your travel to clinic appointments, for your patience with us as we try to find the right medication dosages to help with your symptoms.

“Thank you for not giving up and for giving us hope.”