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Connecting with Carnie Wilson on Breaking the Silence and Building Support for Mental Health and Tardive Dyskinesia

Health2025-08-21

(BPT) - This article was sponsored and developed by Neurocrine Biosciences, Inc. Carnie Wilson is a paid spokesperson for INGREZZA^® (valbenazine) capsules/Neurocrine Biosciences. She is not diagnosed with tardive dyskinesia (TD) and does not takeINGREZZA.

August is National Wellness Awareness Month, a time dedicated to promoting overall health, including mental health and emotional well-being. Carnie Wilson, a Grammy-nominated singer-songwriter and mental health advocate, exemplifies this mission by encouraging individuals living with mental illness, who may have tardive dyskinesia (TD) or who may be at risk for TD, to stand up to stigma and discuss their symptoms openly without fear or embarrassment. TD can impact all aspects of life: physical, emotional and social. By supporting these conversations during National Wellness Awareness Month, Carnie hopes to inspire those people who may be suffering in silence to speak up and seek support and prioritize their well-being.

Carnie has partnered with Neurocrine Biosciences as a paid spokesperson, on the ConnectING with Carnie™ campaign, which aims to reach people affected by TD and provide information about diagnosis and treatment. Driven by her personal experiences with mental health challenges and those of her family, Carnie aims to raise awareness about the challenges faced by people living with mental illness and TD, an involuntary movement disorder associated with the use of antipsychotic medication that may be necessary to treat certain mental health conditions such as major depressive disorder, bipolar disorder, schizophrenia or schizoaffective disorder.^1-5Mild, moderate or severe TD movements can occur in different parts of the body, primarily in the face, torso, limbs and fingers or toes.^1-4

"I'm really struck by the fact TD affects at least 800,000 adults in the United States, yet as many as 60% are not yet diagnosed. They may be uncertain about what to do about their symptoms and suffering from the impact the movements are having on their daily lives,"^1,6,7 stated Carnie. "While I don't have TD, I've had the opportunity to sit down with two amazing women who live with TD, Moira and Deanne. Through our conversations, I've learned even mild TD movements can be very impactful for people and their families in their daily lives."

Through ConnectING with Carnie, Moira and Deanne share their powerful stories of how they have navigated life with TD. Their stories show the functional, social and emotional challenges that come from living with the condition as well as their experience after they started taking INGREZZA^® (valbenazine) capsules. INGREZZA is a one capsule, once daily medication that's proven to reduce TD in adults.^6,8 In a clinical study, INGREZZA was proven to reduce TD in adults at six weeks, and most people saw results in just two weeks.^6,†,‡ The most common side effects of INGREZZA in people with TD are sleepiness and tiredness.

IMPORTANT SAFETY INFORMATION

INGREZZA or INGREZZA SPRINKLE can cause serious side effects in people with Huntington's disease, including: depression, suicidal thoughts, or suicidal actions. Tell your healthcare provider before you start taking INGREZZA or INGREZZA SPRINKLE if you have Huntington's disease and are depressed (have untreated depression or depression that is not well controlled by medicine) or have suicidal thoughts. Pay close attention to any changes, especially sudden changes, in mood, behaviors, thoughts, or feelings. This is especially important when INGREZZA or INGREZZA SPRINKLE is started and when the dose is changed. Call your healthcare provider right away if you become depressed, have unusual changes in mood or behavior, or have thoughts of hurting yourself.

Please see full Important Safety Information including Boxed Warning below and fullPrescribing Information andMedication Guide.

Moira being interviewed while sitting in a garden

Moira was compensated by Neurocrine Biosciences to share her story.

Moira's Journey

Since 2010, Moira has been living with TD. In 2017, she was prescribed INGREZZA, the first VMAT2- inhibitor approved to treat TD, and after about a month of treatment she began to notice a reduction in her movements. Eight years later, she is still satisfied with INGREZZA and continues to take it. Moira is a mom, wife, clinical social worker and minister. When she started to have uncontrollable movements of her face and tongue, she experienced embarrassment at work and a feeling of isolation from her family and loved ones. Her husband, Forest, was one of Moira's biggest supporters. He listened, was patient and would let her know when her movements were noticeable.

"Being a pastor brings a lot of meaning to my life, and the movements were impacting my job," stated Moira. "I was extremely self-conscious about my speech and how my mouth movements looked. I was worried about my job because my mouth movements made me look like I was chewing gum, which made me appear unprofessional…I was exhausted by the energy it took to deal with the TD symptoms."

However, after INGREZZA, Moira experienced a reduction in the movements which made her feel less self-conscious and helped her get back to enjoying her life at work, with her community and family. "My husband told me that after two to three weeks, he noticed a reduction in the TD movements. For me, it took about a month to feel and notice improvement." Moira's experience with INGREZZA is individual; others may have different experiences with INGREZZA. Some individuals taking INGREZZA may notice a reduction in movements as early as two weeks, with clinical results at six weeks.

During her conversation with Carnie, Moira shared advice for individuals who may be living with TD. "My advice is to rely on your strong personal relationships for support…there is help available. If you are experiencing uncontrollable movements, talk to your doctor, and if you're diagnosed with TD, ask your doctor about treatment with INGREZZA."

Deanne in a peach sweater and flora scarf sitting on the couch being interview by a woman sitting in a chair

Deanne was compensated by Neurocrine Biosciences to share her story.

Deanne's Journey

Deanne was living with bipolar disorder and had been on and off antipsychotic medication since she was 18 years old. However, it wasn't until 2020 when Deanne started to notice involuntary muscle movements in her neck, which eventually began to impact daily activities including driving, sleeping and everyday activities. "One day, I was watching fireworks with my family, and I couldn't keep my head still enough to look up and watch. That made me realize I had to get help," said Deanne.

Deanne spoke with a healthcare provider who diagnosed her with TD. "TD completely changed my life," stated Deanne. "Because I experienced a lot of head movements, TD made driving very difficult. Any time I tried to relax, all my head would do is jerk, and nothing would stop it." Her healthcare provider prescribed INGREZZA and within just three to four weeks of starting treatment, Deanne saw an improvement in her TD movements. Though not entirely gone, the reduction was significant. "I could hold my head still, which made doing things with my family, getting to sleep and driving easier. I felt like my TD was well managed." Deanne's experience with INGREZZA is individual; others may have different experiences with INGREZZA. Some individuals taking INGREZZA may notice a reduction in movements as early as two weeks, with clinical results at six weeks.

In speaking with Carnie, Deanne shared advice for people who may have or be at risk for developing TD. "Make sure you share with your healthcare provider that you have uncontrolled movements and be honest about how much they're impacting your life. Self-advocate until you get an answer - don't give up."

As we recognize National Wellness Awareness Month, it's important to reflect on these powerful stories, which offer a glimpse into the experiences of people living with TD. Carnie continues to foster meaningful conversations, with people living with TD, and with care partners and healthcare professionals, to shine a light on the unique journeys of those affected by mental illness and TD.

"I have always been an advocate for helping and empowering others. Now, it means so much to me to be able to use my voice to be open about my mental health journey, with the hope that I can help people facing their own challenges. I've openly shared my experiences with postpartum depression and addiction, and I've actually struggled with depression and anxiety for most of my life - I've found strength by being vulnerable and open about what I'm going through, as well as seeking treatment and support," said Carnie. "My hope is I give others hope."

To learn more about TD, explore treatment with INGREZZA and listen to the full stories of Moira, Deanne and others, visit ConnectingWithCarnie.com.

Important Information

Approved Uses

INGREZZA^®(valbenazine) capsules or INGREZZA^®SPRINKLE (valbenazine) capsules are prescription medicines used to treat adults with:

movements in the face, tongue, or other body parts that cannot be controlled (tardive dyskinesia).
involuntary movements (chorea) of Huntington's disease. INGREZZA or INGREZZA SPRINKLE do not cure the cause of involuntary movements, and do not treat other symptoms of Huntington's disease, such as problems with thinking or emotions.

It is not known if INGREZZA or INGREZZA SPRINKLE is safe and effective in children.

IMPORTANT SAFETY INFORMATION

Do not take INGREZZA or INGREZZA SPRINKLE if you:

are allergic to valbenazine, or any of the ingredients in INGREZZA or INGREZZA SPRINKLE.

INGREZZA or INGREZZA SPRINKLE can cause serious side effects, including:

Allergic reactions. Allergic reactions, including an allergic reaction that causes sudden swelling called angioedema, can happen after taking the first dose or after many doses of INGREZZA or INGREZZA SPRINKLE. Signs and symptoms of allergic reactions and angioedema include: trouble breathing or shortness of breath, swelling of your face, lips, eyelids, tongue, or throat, or other areas of your skin, trouble with swallowing, or rash, including raised, itchy red areas on your skin (hives). Swelling in the throat can be life-threatening and can lead to death. Stop taking INGREZZA or INGREZZA SPRINKLE and go to the nearest emergency room right away if you develop these signs and symptoms of allergic reactions and angioedema.
Sleepiness and tiredness that could cause slow reaction times (somnolence and sedation).Do not drive a car or operate dangerous machinery until you know how INGREZZA or INGREZZA SPRINKLE affects you. Drinking alcohol and taking other medicines may also cause sleepiness during treatment with INGREZZA or INGREZZA SPRINKLE.
Heart rhythm problems (QT prolongation).INGREZZA or INGREZZA SPRINKLE may cause a heart rhythm problem known as QT prolongation. You have a higher chance of getting QT prolongation if you also take certain other medicines during treatment with INGREZZA or INGREZZA SPRINKLE. Tell your healthcare provider right away if you develop any signs or symptoms of QT prolongation, including: fast, slow, or irregular heartbeat (heart palpitations), shortness of breath, dizziness or lightheadedness, or fainting or feeling like you are going to faint.
Neuroleptic Malignant Syndrome (NMS).NMS is a serious condition that can lead to death. Call a healthcare provider right away or go to the nearest emergency room if you develop these symptoms and they do not have another obvious cause: high fever, stiff muscles, problems thinking, irregular pulse or blood pressure, increased sweating, or very fast or uneven heartbeat.
Parkinson-like symptoms. Symptoms include: body stiffness, drooling, trouble moving or walking, trouble keeping your balance, shaking (tremors), or falls.

Before taking INGREZZA or INGREZZA SPRINKLE, tell your healthcare provider about all of your medical conditions including if you: have liver or heart problems, are pregnant or plan to become pregnant, or are breastfeeding or plan to breastfeed.

Tell your healthcare provider about all the medicines you take, including prescription and over-the-counter medicines, vitamins, and herbal supplements. Make sure you tell all of your healthcare providers that you are taking INGREZZA or INGREZZA SPRINKLE. Taking INGREZZA or INGREZZA SPRINKLE with certain other medicines may cause serious side effects. Especially tell your healthcare provider if you: take digoxin or take or have taken a monoamine oxidase inhibitor (MAOI) medicine. You should not take INGREZZA or INGREZZA SPRINKLE if you are taking, or have stopped taking, a MAOI within the last 14 days.

The most common side effects of INGREZZA or INGREZZA SPRINKLE in people with tardive dyskinesia aresleepiness and tiredness.

The most common side effects of INGREZZA or INGREZZA SPRINKLE in people with chorea associated with Huntington's disease include sleepiness and tiredness, raised itchy red areas on your skin (hives), rash, and trouble getting to sleep or staying asleep.

These are not all of the possible side effects of INGREZZA or INGREZZA SPRINKLE. Call your doctor for medical advice about side effects. You are encouraged to report negative side effects of prescription drugs to the FDA. Visit MedWatch at www.fda.gov/medwatch or call 1-800-FDA-1088.

Dosage Forms and Strengths: INGREZZA and INGREZZA SPRINKLE are available in 40 mg, 60 mg, and 80 mg capsules.

Please see fullPrescribing Information, including Boxed Warning, andMedication Guide.

REFERENCES

1. Cloud LJ, Zutshi D, Factor SA. Tardive dyskinesia: therapeutic options for an increasingly common disorder. Neurotherapeutics. 2014;11(1):166-176.

doi:10.1007/s13311-013-0222-5

2. American Psychiatric Association. Diagnostic and Statistical Manual of Mental Disorders. 5th ed. American Psychiatric Association; 2023.

3. Guy W. ECDEU Assessment Manual for Psychopharmacology. Rev. 1976. U.S. Dept. of Health, Education, and Welfare, Public Health Service, Alcohol, Drug Abuse, and Mental Health Administration, National Institute of Mental Health, Psychopharmacology Research Branch, Division of Extramural Research Programs; 1976.

4. Task Force on Tardive Dyskinesia. Tardive Dyskinesia: A Task Force Report of the American Psychiatric Association. Washington, DC: American Psychiatric Association; 1992.

5. Caroff SN, Hurford I, Lybrand J, Campbell EC. Movement disorders induced by antipsychotic drugs: implications of the CATIE schizophrenia trial. Neurol Clin.

2011;29(1):127-148. doi:10.1016/j.ncl.2010.10.002

6. Data on file. Neurocrine Biosciences, Inc.

7. Carbon M, Hsieh CH, Kane JM, Correll CU. Tardive dyskinesia prevalence in the period of second-generation antipsychotic use: a meta-analysis. J Clin Psychiatry.

2017;78(3):e264-e278. doi:10.4088/JCP.16r10832

8. INGREZZA capsules [package insert]. San Diego, CA: Neurocrine Biosciences Inc.; 2024.

† INGREZZA was studied in a 6-week clinical trial. A total of 234 people participated in the study. Results were based on 79 people taking the recommended dose of 80 mg.

‡ In a 6-week clinical study. Post-clinical study evaluation of 149 patients who took 40 mg and/or 80 mg during the first 2 weeks; 64% had at least a 1-point reduction on an uncontrollable movement severity scale.

This article was sponsored and developed by Neurocrine Biosciences, Inc. Moira and Deanne were compensated by Neurocrine Biosciences to share their story. Carnie Wilson is a paid spokesperson for INGREZZA^® (valbenazine) capsules/Neurocrine Biosciences. She is not diagnosed with tardive dyskinesia (TD) and does not takeINGREZZA.

Source: BrandPoint

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