Will Forte on Huntington’s Disease: Raising Awareness & Fighting HD

During his nearly decade-long run on Saturday Night Live, Will Forte was known for his comedic timing and characters like the parody spy MacGruber. Now, the actor is leveraging his platform to raise awareness about a far more serious issue: Huntington’s disease, a progressive neurodegenerative disorder that has directly impacted his family. Forte’s involvement comes through a partnership with Teva Pharmaceuticals’ “Honestly HD” campaign, launched in 2022, which aims to educate those diagnosed with Huntington’s and provide support resources. The campaign’s focus is particularly poignant given that Forte’s brother-in-law, Doug Modling, received a diagnosis of HD in 2022, following his father’s own battle with the disease.

Understanding Huntington’s Disease

Huntington’s disease is often misunderstood, frequently conflated with other terms. It’s not simply “high definition” or a type of hot dog, but a serious condition affecting around 41,000 Americans, according to the Huntington’s Disease Society of America. Even more individuals – over 200,000 – are at risk of inheriting the disease. HD progressively breaks down nerve cells in the brain, leading to a constellation of debilitating symptoms: involuntary movements, cognitive decline, and mental health challenges, ultimately resulting in premature death.

The “Honestly HD” campaign, whereas unbranded, does provide a link to information about Teva’s Austedo, a medication used to treat chorea, the involuntary movements associated with Huntington’s. The addition of Forte and Modling’s story to the campaign website, featuring images and a video discussing their family’s experiences, is intended to personalize the disease and reduce the stigma surrounding it. Heather DeMyers, VP of U.S. Innovative medicines marketing at Teva, stated that their story “captures the perseverance of so many families impacted by this disease” and offers “inspiration, hope and the importance of community.”

The Genetics of Huntington’s: A Closer Seem at Testing

Understanding Huntington’s often begins with understanding its genetic basis. Testing involves analyzing blood samples to count CAG repeats within the HTT gene. A result of 26 or fewer repeats indicates a negative test. Between 27 and 35 repeats suggests the individual won’t develop HD but could pass the gene to their children. Results of 36 to 39 are inconclusive, meaning the individual may or may not develop the disease. A count of 40 or more repeats confirms that the individual will eventually develop Huntington’s.

Forte recounted his experience learning about the disease after meeting his wife, Olivia, 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 This proves.” Subsequently, Olivia was tested and found to be clear of the gene, while Modling’s test in 2022 confirmed he carried the genetic marker for HD.

The Multifaceted Symptoms of Huntington’s Disease

The symptoms of Huntington’s disease manifest in three primary categories. Motor symptoms involve involuntary movements, including chorea – described by Modling as “shaking or flailing or tapping” – as well as dystonia, characterized by rigid muscle contractions. Balance, coordination, swallowing, and speech can also be affected. Cognitive symptoms encompass difficulties with planning, focus, information processing, memory, and self-awareness. Finally, the disease can lead to mood and behavioral issues, including depression, irritability, apathy, and even psychosis.

Forte likened the experience of HD to a combination of ALS, Parkinson’s, and Alzheimer’s disease – a particularly devastating triad. Modling described noticing early symptoms before his diagnosis, stating, “I kind of saw symptoms in myself…I had kind of like blinders on a little bit. So, it was great that I was able to get actual tests.” He specifically noted issues with balance and vertigo, particularly at higher altitudes.

Current Treatment Options and Ongoing Research

While there is currently no cure for Huntington’s disease, several medications are available to manage its symptoms. The U.S. Food and Drug Administration has approved tetrabenazine (Xenazine, marketed by Lundbeck), valbenazine (Ingrezza, marketed by Neurocrine Biosciences), and deutetrabenazine (Austedo, marketed by Teva) to suppress chorea. These medications are also used to treat tardive dyskinesia, as previously detailed in Forbes. Other medications, such as olanzapine, aripiprazole, amantadine, levetiracetam, and clonazepam, may also be used, but often come with their own side effects, requiring careful consideration by a specialist.

Beyond medication, physical, occupational, and speech therapy can help manage motor and cognitive symptoms. Assistive devices, such as walkers and wheelchairs, may become necessary as the disease progresses. Psychotherapy is also crucial, not only for individuals with HD but also for their families and caregivers.

Living Actively with Huntington’s: Doug Modling’s Perspective

Despite the challenges, Modling emphasizes the possibility of living a full and productive life with Huntington’s. “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,” he said. He stresses that everyone faces struggles and that HD simply adds another layer to the complexities of life. “I just happen to know what’s going to accept me out.”

Forte also highlighted Modling’s bravery in openly discussing his condition and his willingness to participate in the “Honestly HD” campaign. In addition to his advocacy function, Forte is also developing a sketch comedy show with his 82-year-traditional mother and her friend Carol, with Modling even stepping in to fill in for Forte’s mother when she contracted COVID-19.

Looking Ahead: Continued Awareness and Research

Forte hopes that increased awareness, driven by campaigns like “Honestly HD” and personal stories like his and Modling’s, will lead to greater investment in research and a cure for Huntington’s disease. The campaign’s goal is to move the conversation around HD from “low definition” mystery to a clearer understanding of the disease and its impact, fostering hope and support for those affected. Will Forte and Doug Modling’s collaborative effort underscores the importance of community and the power of sharing personal experiences to combat stigma and drive progress in the fight against Huntington’s disease. You can learn more about the campaign and resources available at Honestly HD.

Further information about Huntington’s disease can be found on the Huntington’s Disease Society of America website: https://hdsa.org/

a recent interview with Will Forte discussing his family’s journey with Huntington’s disease can be viewed on YouTube: https://www.youtube.com/watch?v=7BWWM5jjzjs