The ALS program at Penn Medicine opened in 1999 and has been designed to provide all around care for people with ALS and their families throughout the course of the illness.
Our team includes physicians, nurses, therapists and counselors who are all dedicated to the care of people with ALS.
This is a true multidisciplinary care program.
At each visit, patients will be seen by as many members of the team as they need.
- All patients will be visited by one of our nurses and seen by their neurologist.
- As necessary and desired, they can choose to be evaluated by our physical therapist, occupational therapist, speech and language pathologist, and dietician.
- There is always an opportunity to speak to Kelly Almasy, RN about current or upcoming research opportunities.
- At any point, patients or families may request a free consultation with our genetic counselor, Tanya Bardakjian MS, CGC, for information about genetic testing and potential genetic contribution to disease. If there is a desire to pursue genetic testing, Tanya will help facilitate testing.
- Some people with ALS may need to see a pulmonologist for management of more complex pulmonary issues. Any patient seen at our clinic can request to see Dr. Susan Gregory, who is a pulmonologist with extensive experience in the respiratory management of people with ALS and other neuromuscular diseases.
Our physical and occupational therapists evaluate patients to determine what exercises and stretching may prove most beneficial as well as to recommend appropriate equipment. In addition, the therapists will work with patients and families to teach valuable skills for care at home. When equipment is recommended, our care team takes responsibility for getting that equipment ordered or giving explicit instructions on how it may be obtained.
Detailed swallowing evaluations are performed on site as part of routine appointments so that the speech and language pathologist can make recommendations about safe swallowing techniques, food consistencies and alternative nutrition, as necessary. Our dietitian can help with calorie and fluid goals as well as education and recipe ideas. There are circumstances under which a feeding tube may be recommended; if a patient chooses to pursue this option, it is arranged as an outpatient procedure at Pennsylvania Hospital and performed by a surgeon with extensive experience in our ALS population.
At the end of each ALS clinic day, our multidisciplinary team meets to discuss each patient who was seen. We do this to ensure that all team members involved in the patient’s care remain fully informed and to carry out the care plan as it was outlined with the patient and family.
In addition to visits to the Center, patients and family members can access our full time nurse practitioner, Mary Kelley, Monday to Friday, for help with issues as they arise. After hours and over the weekend, there is a neurologist on call at all times.
Make an appointment at the Penn Comprehensive ALS Center
To make an expedited appointment with a Penn ALS neurologist, call 215-829-3053.