Above and beyond to find a cure

(An excerpt from this article appeared in the Summer 2014 edition of the PREDICT-HD Press)

 

By Christina Colletta

PREDICT-HD Public Relations Assistant

 

As I interviewed Susan Reasor over the phone, she began telling me about her various accomplishments as vice president of the Huntington's Disease Society of America (HDSA) Greater North Texas Affiliate.

 

"Mooommm!" A little voice directed at Reasor interrupted our conversation, asking for help with something.

 

Susan waving
Susan Reasor waves while lying on her side during the spinal tap procedure to collect her cerebral spinal fluid. Reasor snapped photos during her PREDICT-HD visit to share with others who are considering research participation.

We continued, covering Reasor's contributions to the HD community through participation in research. "Do you want this room cleaned also?" a voice on the other end, which turned out to be that of a carpet cleaner, cut in.

 

A mother of three, Reasor's daily juggling act consists of tackling her responsibilities as a dedicated Huntington disease advocate and volunteer while working as a stay-at-home mom and tending to her 11-year-old daughter and 8-year-old twins.

 

Some would call Susan Reasor supermom, while others know her as super-advocate for the HD community in Dallas.

 

Driven to find a cure for her HD gene positive father, sister and at-risk nephews and niece, one thing is certain: she is steadfastly committed to her mission.

 

"I will die fighting for a cure," said Reasor.

 

A life-changing diagnosis

On June 14, 2011, after years of being misdiagnosed with frontotemporal dementia, Reasor's father was diagnosed with Huntington disease.

 

"It was a hard hitter," said Reasor. "Since we didn't know we had a family history of Huntington disease and since there wasn't an HDSA Center of Excellence in the Dallas region [where Reasor lives], we hadn't been educated about genetic testing."

 

Without any genetic testing guidance to prompt him to get his affairs in order before testing, her father's diagnosis prohibited him from obtaining long-term health care insurance. "He was pretty much out of luck," said Reasor.

 

Six months after her father was diagnosed, Reasor's sister received the devastating news that she faced the same genetic fate as their father.

 

Before undergoing her own testing, Susan wanted to ensure she was prepared to deal with her results. After receiving extensive counseling, she finally decided to get tested five hours away in Houston at the only HDSA Center of Excellence in the state.

 

"My husband and I chose January since it has always been my least favorite month of the year, just in case I got bad news," said Reasor. "We planned trips in advance for throughout the year to help distract our minds from the results."

 

In January of 2013, Reasor tested negative for Huntington disease.

 

Although she was beyond grateful to find out she and, by extension, her children did not have Huntington disease, her results didn't come without complications for her and her family.

 

"When I tested negative, it killed the dynamic between me and my sister," said Reasor. "Survivor's guilt has been tough. Really tough."

 

Taking Action

After receiving her results, Reasor decided she would do everything in her power to help find a cure for HD.

 

"Before I tested negative, I didn't want to be involved with any trials and I didn't want to volunteer for HDSA knowing I would one day be the one they were helping," said Reasor. "My test results really determined my place in the HD community."

 

Eager to join the fight against HD, Reasor immediately contacted HDSA to see how she could get involved and was referred to a small group of individuals in the Dallas area that were looking to start a local affiliate. Reasor jumped at the opportunity, and the HDSA Greater North Texas Affiliate was born.

 

Now, Reasor is not only the affiliate's vice president, but an HDSA clinical trial diplomat, research ambassador and support group facilitator.

 

Whether she is helping start up a local HDSA affiliate or looking to participate in a research study, Reasor persists with an energetic can-do attitude. At the 2013 HDSA National Convention in Jacksonville, Fla., Reasor was on the prowl for more opportunities to get involved when the PREDICT-HD booth caught her eye.

 

"I walked up to [research assistant] Stephen Cross and [public relations coordinator] Sean Thompson and said, 'Sign me up! Use my brain and spinal fluid for research, that's why I'm here!' And I bugged them until they put my name on a list," said Reasor.

 

Shortly after, Reasor flew from Dallas to Iowa City, eager to participate in the PREDICT-HD study.

 

"I was a little afraid of the spinal tap at first, but after having three children with a C-Section, it was easy," said Reasor. "I find it fascinating the things we can do just by donating spinal fluid."

 

Spinal fluid wasn't the only thing Reasor donated to the HD community as a result of her PREDICT-HD trip. She took pictures throughout her experience, which she now shares with others who are considering participating in research studies to ease any fears they might have.

 

Susan Reasor with CSF
Susan Reasor snapped a selfie with her cerebral spinal fluid sample during her PREDICT-HD visit.

In one photo, Susan, beaming with positivity and satisfaction after having just received a spinal tap moments before, proudly displays her vial of spinal fluid like a badge of honor.

 

"I felt like I finally was really in a trial and I did what I set out to do," said Reasor.

 

Inspired by her positive experience with PREDICT-HD, Reasor wanted to contribute more to HD research while helping others in Texas achieve the same sense of purpose she felt after participating in a study.

 

"We are at a sad disadvantage in Dallas," said Reasor. "We have a whole group of people down here who want to help and want to participate in studies but don't have the means."

 

Looking to help expand PREDICT-HD's reach while giving those in the Dallas region the opportunity to participate in a study from the comfort of their own home, Reasor arranged for PREDICT-HD staff Amanda Miller and Bella De Soriano to come to Dallas for HDQLIFE, an observational substudy of PREDICT-HD. Miller and De Soriano were able to meet with attendees from Reasor's support group and conduct at-home HDQLIFE visits, which was beneficial to both participants and the research team in its effort to meet its participation goals.

 

"Unless people can magically find a cure, we need more public participation," said Reasor.

 

Above all, Reasor says the most important part of her mission is fostering a community that individuals with HD and their families can turn to for support and guidance.

 

"I think the most essential thing is building a community so everyone doesn't feel alone, I think that cuts out the fear factor for a lot of people," said Reasor "They could be the change, and I'll do whatever I can to help."