Families dealing with Huntington’s Disease (HD) often feel isolated. Symptoms of the fatal genetic disease range from the embarrassing to the debilitating as patient’s physical and mental abilities decline. Huntington’s Disease Society of America (HDSA) aims to help families dealing with the diagnosis find community through events like the Team Hope Walk being held in Coronado on Sept. 16.  

“All of our events, including this Team Hope Walk, is really a chance for families to find the support that they need and be able to know that they’re not alone in this. It’s a really difficult disease and that there is community to support them,” said Nichole Mendoza, regional development officer of HDSA in the Pacific/West.  

HDSA is the largest nonprofit supporting and educating people with HD. It was founded in 1967 by the widow of folk musician Woody Guthrie. Today there are 52 chapters across the nation. California is the only state with multiple chapters. Of the five in the state, San Diego is the largest.  

Beyond a day bringing families together, the walk is also a chance for the community to learn more about the rare disease and help fund research and support services. Team Hope has raised more than $20 million for HD since it started in 2007, with walks in over 100 cities.  

Christy Figueroa-Pettis is the current board president of the San Diego chapter of HDSA. Twelve members of her family have died from HD, including her mom and aunt two weeks apart in 2016.  

“We thought our family was all alone. All these years that we had it, we never were around other families. So this walk is bringing us together and building those relationships and supporting each other,” she said.  

The chapter hosts pickle ball tournaments, four support groups, and other events. The walk is unique as it is open to the public. Figueroa-Pettis hopes San Diego will become better educated about the disease. She noted that if you ask a random person if they know what Huntington’s Disease is, nine times out of 10 they will say no.  

“That’s scary, because how can we move forward?” she said.  

Huntington’s Disease is a brain disease passed down from generation to generation. There are currently 41,000 symptomatic Americans with another 200,000 at risk of inheriting the disease.  

One of Figueroa-Pettis’ four daughters has already been diagnosed with HD.  

“I don’t want my grandkids to have to go through it,” she said, stating that her goal is to find a cure.  

She has participated in studies led by Dr. Jody Corey-Bloom at the UCSD Huntington’s Disease Clinic. 

“These are very exciting days for HD research. We have clinical trials currently underway that are attempting to approach a cure/mitigation through several different avenues,” said Dr. Corey-Bloom.  

Many of the efforts focus on lowering the huntingtin protein, thought to be the cause of HD, either through directly targeting the protein, gene splicing, and other methods.  

“Funds raised by the HDSA through activities such as the upcoming Team Hope Walk strengthen the HDSA’s efforts to fund researchers from around the world who are working on cutting edge approaches to slow or stop HD. In addition, they allow the HDSA to provide support to the currently 56 HDSA Centers of Excellence that provide an elite multidisciplinary approach to HD care and research,” she said.  

Figueroa-Pettis said although she cared for her mother throughout her decline and death, she still did not know how hard it was to deal with the symptoms until she started dealing with them herself.  

“It is an emotional disease. It’s embarrassing,” she said. Her mother went from a vibrant, amazing person who took the lead to losing her independence. For her part, she retired early from her job at the San Diego Community College District and has had to give up some of her faith and political work. She used to teach restorative justice at jails but can no longer do public speaking on that scale.  

Most HD patients die from either falling or choking. Figueroa-Pettis already experiences random choking and lack of balance, as well as short-term memory loss, cognitive decline, struggles with speech, mood swings, and chorea – outbursts of involuntary movements. There can also be stigma around the disease as chorea and slurred speech can lead people to assume patients are on drugs, she explained.  

“[HD] is a fatal genetic disorder that causes the progressive breakdown of nerve cells in the brain and is described as having ALS, Parkinson’s and Alzheimer’s simultaneously. So if you think of one person who has this or that, we have everything— and those three equal Huntington’s,” Figueroa-Pettis said.  

Michael Hotaling also comes from a family that did not have community while dealing with the disease. His maternal grandmother died from HD and his mother died by suicide after experiencing the onset of “scary” symptoms. Last December, his sister died at 61 without an official HD diagnosis but with the exact match to all the symptoms.  

“That really, really pushed me to do something,” Hotaling said.  

He joined the HDSA chapter board and is helping plan the route of the walk through Tidelands Park. He hopes it will help relieve the burden placed on families dealing with such a devastating disease.  

“I think a lot of families feel like they’re on their own and they don’t have a support network. And this was a way to help us show that there is a support. There are others out there that care,” Hotaling said.  

Being on the board has helped him process the grief of losing his sister. He does not have the genetic anomaly associated with HD.  

“When I see and interact with people that are dealing with… the disease, to understand how they’re dealing with it in such [an] optimistic and hopeful way. So that helps me get through the grief and there’s a guilt factor for me too to know that I was spared the disease for some reason,” he said. “Maybe there’s a difference I can make.” 

The Sept. 16 walk will begin at 9 a.m., with registration starting at 8:30 a.m. at Coronado Tidelands Park. All proceeds from the event will go towards HDSA’s mission to improve the lives of people affected by HD and their families. 

Last year, 300 people participated in the walk. Families often stay after the event to picnic and spend time together.  

“For each of these families in particular, there are a lot of difficulties with transportation and people being healthy enough to be out and about. So when we have these big events, families definitely turn out and want to join together,” Mendoza explained.  

Hotaling hopes having the walk in such a visible location will add to the number of people who learn about the disease.  

“I don’t have the mentality that I’m ready to die,” Figueroa-Pettis said. “My ultimate goal is to be part of the cure.”  

To learn more about the event or to register, contact Nichole Mendoza at [email protected]. Online registration and donation options are also available at hdsa.org/thwsandiego.