Amyotrophic lateral sclerosis (ALS), also known as Lou Gehrig's disease, is a neurodegenerative disorder characterized by the loss of motor neurons in the brain and spinal cord (nerve cells) that control muscles. This results in muscular weakness that worsens over time while producing ever increasing physical disabilities.
Penn Medicine's ALS specialists have been caring for patients through the Comprehensive ALS Center since 1999. The Center is designed to provide research-based, comprehensive care for ALS patients and their families throughout the course of the illness.
Why Choose Penn Medicine for ALS Care?
Penn neurologists offer consultation and advanced neurodiagnostic testing to diagnose ALS. The diagnosis of ALS is made from evaluating a patient's medical history and performing a complete physical examination by a neurologist experienced in neuromuscular disorders.
Multidisciplinary Approach to ALS Patient Care
Our team consists of experienced providers from multiple disciplines, including:
- Neurology
- Pulmonology
- Nursing
- Physical and Occupational Therapy
- Speech Therapy
- Nutrition
- Social Service
- Genetic Counseling
- Assistive Technology
Meet the Penn Comprehensive ALS Center treatment team
Additionally, our team collaborates with with the Duchenne and Becker Muscular Dystrophy Carrier Clinic and Fishman Program for Home Assisted Ventilation.
Leading-Edge Research
The ALS Center actively engages in research and patients can elect to enroll in a clinical trial of a drug or other treatment. Participation for patients can also include research in neuroimaging, biomarkers, genetics and cognitive function.
Learn more about ALS research at Penn Medicine
Donate to Penn Comprehensive ALS Center Research Efforts
Compassionate ALS Services and Support
People with ALS who come to Penn for treatment benefit from personalized care throughout the course of the disease, while family and caregivers have access to a wide range of support services. The ALS Center offers patients and families:
- Coordinated care with primary care physicians
- Ongoing individualized care
- Opportunities to participate in research protocols
- Patient and family education about the disease process
- Patient and family education about the latest research initiatives
- Specialized services including physical therapy, occupational therapy, speech therapy and nutrition
Genetic Testing for Amyotrophic Lateral Sclerosis at Penn
About 10 percent of ALS is caused by one of a group of genetic mutations. Known as Familial ALS (FALS), many FALS patients have a family history of ALS, Parkinson's disease or Parkinsonism, young onset or atypical dementia or atypical psychiatric disease. Since the discovery of the C9ORF72 gene in 2011, it has become clear that a small percentage of ALS patients without a family history are also positive for this gene. Further research has identified many other genes which can influence ALS risk, often without a clear family history.
This information may affect related individuals, including children, parents, siblings and others who will be faced with a decision of whether or not to seek personal genetic testing. Recent ALS clinical trials using molecular techniques that may be able to silence mutant ALS genes may influence the decision to be genetically tested since this knowledge may allow participation in these trials. Finally, with the FDA approval of Qalsody™ (tofersen), which targets mutations in the SOD1 gene, genetic testing may offer additional ALS therapies.
To navigate decisions around undergoing genetic testing and the interpretation of results, the Penn Comprehensive ALS Center offers onsite genetic counseling for patients and families.
Make an Appointment
To make an expedited appointment with a Penn ALS neurologist, call 215-829-3053.