During his eight seasons on Saturday Night Live, Will Forte often played the character MacGruber. It was a parody of that TV character Macgyver who could seemingly improvise a fix to practically anything. Well, now Forte is trying to bring much more attention via the “Honestly HD” campaign with Teva Pharmaceuticals to something that honestly doesn’t have a easy fix—Huntington’s disease. That’s because his brother-in-law, Doug Modling, has been battling HD, a disease that currently has no cure.
What Is Huntington’s Disease
When most people see HD, they may think of “high definition” or even “hot dog.” They may not know much if anything about Huntington’s disease and that it is a progressive neurodegenerative disease. With HD, over time more and more nerve cells in the brain break down—leading to worsening involuntary movements, cognitive issues and mental health challenges that culminate in premature death. Many people may not be aware that this type of HD currently affects around 41,000 Americans, according to the Huntington’s Disease Society of America. This hasn’t been the focus of many Americans, even those who are among the more than 200,000 at-risk for inheriting the disease.
But Forte and Modling are trying to change all of this unawareness. Otherwise, lack of awareness leaves HD shrouded in “low definition,” mystery and whole lot of misconceptions, which can make it even harder for those with HD. More awareness can on the other hand lead to more attention and more resources being dedicated to finding some kind of cure for HD. I recently sat down with Forte and Modling in New York City to talk about their perspectives and experiences. Olivia Forte, Will Forte’s wife and Doug’s sister, also chimed in with some thoughts.
Will Forte told me about his introduction to HD after he and Olivia met in 2018,”We started dating, and then she introduced me to her father eventually, who was pretty far progressed with the disease. So I got to see with my own eyes, just what a horrible disease it is.”
How Does Testing For Huntington’s Disease Work
Forte continued by saying, “Then at some point, Olivia got tested for the gene, found out she didn’t have it, and then shortly thereafter, Douglas got tested and found out he did. And that was really tough.” Testing involves taking blood samples and counting what’s called CAG repeats in the HTT gene. Having 26 or fewer means that the test is negative, 27 through 35 suggests that you yourself won’t develop HD but could pass the HD gene to your children, 36 through 39 leaves you in the may or may not develop HD situation and 40 and above implies that you will develop HD..
The 2022 test result confirming Doug’s HD diagnosis prompted Will and Olivia to “search for ways that we could help. And so we took part in various organizations. Olivia’s on the board of the HDSA. And then at some point we went on a news program and Teva saw that and reached out about this awareness campaign.” That news program was on Fox 11 Los Angeles in late 2024.
What Are The Symptoms Of Huntington’s Disease
Will Forte described HD as “like ALS, Parkinson’s and Alzheimer’s” combined. That certainly not a good triple threat to have. Modling said that he noticed that things were off even before he got tested for the HD gene, “I kind of saw symptoms in myself. And it’s kind of hard to notice symptoms in your own self. I think I had kind of like blinders on a little bit. So, it was good that I was able to get actual tests.” Modling mentioned, “Kind of like my balance going away. I would have like vertigo, especially with elevated altitude.”
HD symptoms can fall into three different categories. The first is motor or movement symptoms, meaning dysfunction in how your body moves. These include involuntary, uncontrollable and jerking movements of the arms, legs, torso or face called chorea. Modling described chorea as “shaking or flailing or tapping.” There also may be dystonia, which is when your muscles involuntarily contract and get very rigid, leading to what may be unusual looking poses or postures. Lack of balance and coordination can be problems too as well as issues with swallowing and speaking.
The second category of symptoms are challenges with thinking or cognition. This can be impairments in planning, focusing, processing information, finding the right words to say, remembering things and maintaining self-awareness. You can get stuck on some thought or idea, which is deemed perseveration.
The third category encompasses mood and behavioral issues. HD can lead to depression, mood swings, irritability, apathy or impulsivity. There can even be hallucinations, delusions and other types of psychosis.
What Can Be Done About Huntington’s Disease
Now, even though there is currently no cure for HD, there are ways to reduce and alleviate some of the symptoms. Several medications have already been approved by the U.S. Food and Drug Administration to suppress chorea: tetrabenazine (which has the brand name Xenazine marketed by Lundbeck), valbenazine (Ingrezza marketed by Neurocrine Biosciences) and deutetrabenazine (Austedo marketed by Teva), medications that are also used to treat other movement disorders such as tardive dyskinesia as I’ve detailed before in Forbes.
Other medications could help, too, such as olanzapine (Zyprexa), aripiprazole (Abilify, Aristada), amantadine (Gocovri), levetiracetam (Keppra, Spritam) and clonazepam (Klonopin). However, the challenge is that many of these medications can bring their own side effects that can outweigh the benefits. A doctor who has expertise in HD can discuss this balance with each of the medications and determine with the patient what’s best to use when, why and how.
Physical and occupational therapy can help with the movement issues as well. This can include exercises that help with strength, balance, coordination, flexibility and posture. Speech therapy can assist with talking, eating and swallowing. At some point, different assist devices may be needed such as walkers, handrails and wheelchairs.
Most of the above applies to dealing with the cognitive and mental health effects of HD. Antidepressant, antipsychotic and mood-stabilizing are available, and an HD expert can help find the right balance of using these. A psychotherapist can help not only the person with HD but all of those around helping the person. It’s important, for example, for family members and friends to know what to expect and how to communicate.
One Can Live A Very Active And Productive Life With Huntington’s Disease
Now, all of these issues may feel like a lot, and they are a lot. But that doesn’t mean that HD should necessarily stand for “head down.” Talking to Modling gives you a sense of vibrancy. About HD, Modling said, “It’s been a little worse than I thought it would be, but it’s still livable. I still have a happy life. I happy right now. I feel so good.”
You could say that Modling is modeling the way to live an active and productive life for everyone in general. He emphasized, “Everybody has struggles. Everybody has things where in life that they struggle with, whether it’s addiction, gambling, sex, you know, all that. Life is just a world of kind of chaos and it’s just like how can you make it out of the chaos with the people you care about, your family and friends and be right with yourself the whole time.” He added, “I just happen to know what’s going to take me out.” So, in some ways, HD is giving Modling some high definition about life.
Speaking of family and friends, besides his advocacy work with Modling, Forte mentioned, “I shot a show with my 82-year-old mother and her friend Carol. My mom would always reach out with sketch ideas when I was in Saturday Night Live, and I would say, save it for the Patty Forte sketch show because they were on these pretty insane ideas.” Well, it looks like the time for insane is now. “We got this show together and made six episodes, and it was a family affair,” he explained.”Olivia was helping produce it. My best buds were helping me to make it, and Carol and Patty were staying with Douglas.” Forte added, “Douglas was roommates with them. And then at some point my mom got COVID, and so Douglas came in and filled in for my mom doing this part in the sketch show.”
Forte concluded our conversation by emphasizing how fun it’s been to work with Modling and how brave Modling is “in how he talks about Huntington’s. He had no problem with talking all about his condition.” You could say that they’re both working together to get HD more “highly defined” for everyone else out there in the hopes that more work and research can be done to “help defeat” HD.
