SNL Alum Recounts Family Journey with Debilitating Disease
Actor and comedian, Will Forte, known for this comedy chops in various Saturday Night Live and movie roles, has taken on an advocacy role to support a community living with a rare and debilitating disease.
Huntington’s disease (HD) is best described as a combination of ALS, Parkinson’s, and Alzheimer’s, which affects motor skills, thinking, and a wide range of emotions, which can lead to social withdrawal, according to the Mayo Clinic. HD affects more than 41,000 people in the United States. It runs in families, as Forte knows well. His brother-in-law, Douglas Modling, has been living with HD and its garden variety of symptoms since his early 20s.
Forte began learning about the disease and became an advocate for people with HD, inspired by Modling’s strength and resolve. “Seeing firsthand the challenges my brother-in-law faces, and his enduring hope despite it all, I'm incredibly inspired by the resilience of everyone I’ve met from the HD community. That’s why I’m sharing our story — to help raise awareness of this disease and let people know they are not alone, and that there are resources available to support them," said Forte, in a news release.
Together they’re advocating for the HD community with HonestlyHD, a site with tips for living with this disease, stories of hope, and serves as a resource for people with HD and the people who help them live independently for as long as possible.
“We all have issues, big problems, we’re all human, but we have the ability to do good and to have a positive outlook on life, Modling said in an interview with Men’s Journal. Modling said that he is able to do a lot of things to help mitigate symptoms. He loves to exercise, and along with medical treatment, he believes he’ll be able to live a long, enjoyable life.
He loves spending time with his family, especially Forte’s kids, and loves being an uncle. They’re a reminder for him to “live in the present.” Forte and Modling travel together for events that support the community.
People with HD experience uncontrolled movements, cognitive thinking abilities over time, and behavioral changes. Almost all people with HD develop chorea, which looks like fidgeting and squirming, which can affect their arms, legs, face, and speech. All these things significantly affect your ability to do daily activities.
Modling was familiar with HD before his diagnosis when his dad, a surgeon, was diagnosed and had to retire early. The upside for both father and son was the gift of time, and they got to spend a lot of time together before his passing.
Forte continues to act and was in the remake of the rom-com “Four Seasons” on Netflix where he plays the husband of Tina Fey’scharacter. He’s well-known for his SNL roles, including the fan-favorite MacGruber, and recently sat down with Amy Poehler on her feel-good podcast, “Good Hang.”