Overview
Frontotemporal neurodegeneration with movement disorder is a rare genetic brain disease that affects the front and side parts of the brain (the frontal and temporal lobes). These brain regions control personality, behavior, language, and movement. Over time, nerve cells in these areas break down and die, leading to a combination of thinking and behavior changes along with movement problems. Patients may notice changes in personality, difficulty with language or speech, and problems with coordination or involuntary movements such as tremors, stiffness, or difficulty walking. The disease typically begins in adulthood and gets worse over time. Because it affects both thinking and movement, it can be confused with other conditions like Parkinson's disease or other forms of frontotemporal dementia. There is currently no cure for this condition. Treatment focuses on managing symptoms, such as medications for movement difficulties, speech therapy, and behavioral support. Research is ongoing to better understand the genetic causes and to develop treatments that may slow or stop the disease from progressing.
Key symptoms:
Changes in personality or behaviorDifficulty with speech or finding wordsProblems with planning and decision-makingTremors or shakingMuscle stiffness or rigiditySlow movementsDifficulty walking or balance problemsMemory loss that worsens over timeLoss of empathy or social awarenessInvoluntary muscle movementsDifficulty swallowingApathy or lack of motivationRepetitive or compulsive behaviorsPoor coordination
Variable
Can be inherited in different ways depending on the underlying gene
Adult
Begins in adulthood (age 18 or older)
Treatments
No FDA-approved treatments are currently listed for Frontotemporal neurodegeneration with movement disorder.
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Specialists
View all specialists →No specialists are currently listed for Frontotemporal neurodegeneration with movement disorder.
Treatment Centers
8 centersBaylor College of Medicine Rare Disease Center ↗
Baylor College of Medicine
📍 Houston, TX
🏥 NORDStanford Medicine Rare Disease Center ↗
Stanford Medicine
📍 Stanford, CA
🔬 UDNNIH Clinical Center Undiagnosed Diseases Program ↗
National Institutes of Health
📍 Bethesda, MD
🔬 UDNUCLA UDN Clinical Site ↗
UCLA Health
📍 Los Angeles, CA
🔬 UDNBaylor College of Medicine UDN Clinical Site ↗
Baylor College of Medicine
📍 Houston, TX
🔬 UDNHarvard/MGH UDN Clinical Site ↗
Massachusetts General Hospital
📍 Boston, MA
🏥 NORDMayo Clinic Center for Individualized Medicine ↗
Mayo Clinic
📍 Rochester, MN
👤 Mayo Clinic Center for Individualized Medicine
🏥 NORDUCLA Rare Disease Day Program ↗
UCLA Health
📍 Los Angeles, CA
Travel Grants
No travel grants are currently matched to Frontotemporal neurodegeneration with movement disorder.
Community
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Caregiver Resources
NORD Caregiver Resources
Support, advocacy, and financial assistance for caregivers of rare disease patients.
Mental Health Support
Rare disease caregiving can be isolating. Connect with counseling and peer support.
Family & Caregiver Grants
Financial assistance programs specifically for caregivers of rare disease patients.
Social Security Disability
Learn how rare disease patients may qualify for SSDI/SSI benefits.
Questions for your doctor
Bring these to your next appointment
- Q1.What specific genetic mutation is causing this condition in my case?,How quickly is this disease likely to progress for me?,Are there any clinical trials I might be eligible for?,What medications or therapies can help manage my symptoms right now?,Should my family members be tested for the genetic mutation?,What support services are available for me and my caregivers?,When should we start planning for advanced care needs?
Common questions about Frontotemporal neurodegeneration with movement disorder
What is Frontotemporal neurodegeneration with movement disorder?
Frontotemporal neurodegeneration with movement disorder is a rare genetic brain disease that affects the front and side parts of the brain (the frontal and temporal lobes). These brain regions control personality, behavior, language, and movement. Over time, nerve cells in these areas break down and die, leading to a combination of thinking and behavior changes along with movement problems. Patients may notice changes in personality, difficulty with language or speech, and problems with coordination or involuntary movements such as tremors, stiffness, or difficulty walking. The disease typical
At what age does Frontotemporal neurodegeneration with movement disorder typically begin?
Typical onset of Frontotemporal neurodegeneration with movement disorder is adult. Age of onset can vary across affected individuals.