When Erica Susi peers into the crowd as she’s giving a speech on Sunday and sees her older brother, Brian, and his two young children, she isn’t sure how she will react.
While the University of Virginia fourth-year student is hopeful a recent public speaking course she took will help her stay on point, she isn’t counting on it. “Sometimes,” she said, “emotions just creep up on us.”
Two years ago, Susi’s former stepmother – Brian’s mother – had not been feeling well, and, after a battery of tests, it was determined she had Huntington’s disease.
That meant Brian and his sister, Angie, each had a 50 percent chance of inheriting it. Subsequent testing determined that Brian, a 43-year-old New Jersey cardiologist, had Huntington’s, while Angie did not.
“We were numb,” recalled Jeffrey Susi, father of both Erica and Brian.
Huntington’s disease is an inherited disorder that results in the death of brain cells and is incurable. Physical abilities gradually worsen until a person is unable to talk. Life expectancy is generally around 20 years following the onset of visible symptoms.
Susi was a second-year student at the time of Brian’s diagnosis.
“It makes you take a step back,” she said, “and look at your life and how you’re spending it.”
To that end, Susi – a member of the UVA women’s tennis team – came up with an idea to raise money and bring more awareness to the disease through a new initiative, Hoos for Huntington’s.
On Sunday, the group will host a fundraiser outside of Memorial Gym from 11 a.m. to noon. The event will feature a speech from Susi, and an opportunity to play sports with various UVA student-athletes, including Susi’s tennis teammates; football players Joe Reed and Charles Snowden; basketball players Austin Katstra and Dominique Toussaint; volleyball players Jelena Novakovic and Kiley Banker; golfers Nathan Chuwait and Kate Harper; and soccer players Aaron James and Laurel Ivory.
The idea behind the group grew out of the public speaking course. Susi had signed up because she thought it would be a good skill to have no matter what field she ended up going into in her post-UVA life. However, the elective – taught by Denise Stewart, a lecturer in the drama department – had an unforeseen benefit. As part the final exam, students were required to give a “vision speech.”
Susi’s vision: For her brother to have a healthy life. “I had to think backward of how that could happen,” Susi said, “and I realized there’s a gap between the awareness of Huntington’s disease with other diseases, such as ALS.
“The same number of people who suffer from ALS suffer from Huntington’s, but there’s just a huge gap in awareness.”
With that, Hoos for Huntington’s was born.
Well, not right away.
“It was one of those ideas that you have, but you don’t know if it’s realistic,” Susi recalled. “By taking the class, it really forced me to say, ‘Is this something I really want to do? And how am I going to make it happen?’”
Over winter break, Susi, who is majoring in market management and business analytics in the McIntire School of Commerce, hashed out more of her plan, then met with Ellen Cook, UVA’s director of community engagement. “She really helped me figure what needed to happen – who to contact – and really helped put a lot of the pieces in place,” Susi said.
Susi also coordinated with the Student-Athlete Advisory Committee (for which she was already serving as the communications coordinator), as well as two other organizations, Student-Athletes Committed to Honor and Student Athlete Mentors.
With school, tennis and other extracurricular activities, Susi’s time-management skills were put to the test.
“I think putting together something like this and spreading awareness about a disease like this and doing it for her brother and everybody who is affected … it goes so much further than a tennis win,” women’s tennis coach Sara O’Leary said. “It’s amazing how she’s using her platform as a varsity athlete to do something that is so impactful. I’m just extremely proud of her. It’s just a really, really neat thing that she’s doing.”
Susi hasn’t been in the game-day lineup as much as she would have liked this season, but as one of the team captains, she has contributed in other ways. O’Leary calls her “selfless.”
“She really has made a huge impact on this team and really left her mark on this program,” O’Leary said. “She’s just been a great example for the younger girls.”
Susi, who has accepted a job as a marketing analyst at a company in Arlington, hopes Hoos for Huntington’s can continue after she graduates.
“My goal is to have this become an annual event,” she said, “but my first step is to just raise awareness and also let people know about what the disease is and how it affects people’s lives. Before people donate money, they need to care. And I think this event can really help people take that first step.”
Right now, Brian – who has an 8-year-old daughter and 7-year-old son – seems to be doing OK.
“It depends on how you perceive it,” Susi said. “Sometimes we think if he forgets something, did he just forget it, or did he forget it because that’s a symptom of the disease? It’s really hard to tell at the beginning stages.”
A terrible offshoot is the fact that Susi’s niece and nephew may have the Huntington’s gene.
Since there’s currently no treatment for the disease, Jeffrey Susi – a retired hospital CEO who now sits on a Huntington’s Disease Society of America committee that tries to bring awareness to the disease – said his grandkids probably won’t be tested until their late teens or early 20s.
Jeffrey Susi said the family is taking heart in the fact that some clinical trials have shown promise. “It gives you reason to hope,” he said.
This weekend, the grandchildren – along with Brian, Angie and Jeffrey Susi’s other son, Matthew – will be at the Hoos for Huntington event, as well as a speech Erica is giving on Saturday as part of an Huntington’s Disease Society of America event at the UVA Medical Center.
Jeffrey Susi said Erica has been an inspiration to the whole family. “There were tearful moments,” he said. “You feel helpless. It’s difficult to be patient as you wait for things to develop, and hope that they develop, but I think she’s dealt with it the way many people do, in that she has found something she can do to feel like she’s contributing.
“I think this has been very rewarding for Erica, and I think it makes an amazing impact on Brian.”
Erica Susi is thrilled that Brian and her other family members will be on Grounds this weekend.
“Spending more time with them and cherishing the moments and memories I have with them has helped me get through it,” she said. “And I think it has also helped them get through it.”