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Actor and comedian Will Forte often played MacGruber, a parody of the can-fix-anything TV character Macgyver, on Saturday Night Live. Forte is now raising awareness about something that currently has no easy fix\u2014Huntingon’s Disease. (Photo by: Esther Kuhn\/NBC via Getty Images)<\/p>\n
Esther Kuhn\/NBC via Getty Images<\/p>\n
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 \u201cHonestly HD<\/a>\u201d campaign with Teva Pharmaceuticals to something that honestly doesn\u2019t have a easy fix\u2014Huntington\u2019s disease. That\u2019s because his brother-in-law, Doug Modling, has been battling HD, a disease that currently has no cure.<\/p>\n What Is Huntington\u2019s Disease<\/p>\n When most people see HD, they may think of \u201chigh definition\u201d or even \u201chot dog.\u201d They may not know much if anything about Huntington\u2019s disease and that it is a progressive neurodegenerative disease. With HD, over time more and more nerve cells in the brain break down\u2014leading 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\u2019s Disease Society of America<\/a>. This hasn\u2019t been the focus of many Americans, even those who are among the more than 200,000 at-risk for inheriting the disease. <\/p>\n But Forte and Modling are trying to change all of this unawareness. Otherwise, lack of awareness leaves HD shrouded in \u201clow definition,\u201d 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\u2019s wife and Doug\u2019s sister, also chimed in with some thoughts.<\/p>\n 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.” <\/p>\n How Does Testing For Huntington\u2019s Disease Work<\/p>\n Forte continued by saying, \u201cThen at some point, Olivia got tested for the gene, found out she didn\u2019t have it, and then shortly thereafter, Douglas got tested and found out he did. And that was really tough.\u201d Testing involves taking blood samples and counting what\u2019s 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\u2019t 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..<\/p>\n The 2022 test result confirming Doug\u2019s HD diagnosis prompted Will and Olivia to \u201csearch for ways that we could help. And so we took part in various organizations. Olivia\u2019s 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.\u201d That news program was on Fox 11 Los Angeles<\/a> in late 2024.<\/p>\n What Are The Symptoms Of Huntington\u2019s Disease<\/p>\n Will Forte described HD as \u201clike ALS, Parkinson\u2019s and Alzheimer\u2019s\u201d 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, \u201cI kind of saw symptoms in myself. And it\u2019s 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.\u201d Modling mentioned, \u201cKind of like my balance going away. I would have like vertigo, especially with elevated altitude.\u201d<\/p>\n 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 \u201cshaking or flailing or tapping.\u201d 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.<\/p>\n 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.<\/p>\n 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. <\/p>\n What Can Be Done About Huntington\u2019s Disease<\/p>\n