In 1996, Beth Israel opened the first ALS Certified Treatment Center of Excellence in all of New York City. We still have this program today, and the multidisciplinary care team there makes me incredibly proud.
Most cases of Amyotrophic Lateral Sclerosis, known as ALS or Lou Gehrig’s disease, do not have a known cause, and every patient with the disease has a different journey. As the disease progresses, nerve cells stop sending messages to the body’s voluntary muscles. When this happens, patients begin to lose essential functions like walking, breathing, and swallowing.
Since the disease affects so many areas of the body, coordinating care can be extremely time consuming and difficult. That is where our team supports these patients. Patients who visit the center are seen by many specialists in one day, including neurologists, nurses, social workers, speech therapists, respiratory therapists, nutritionists, and other medical professionals. All of these providers then meet as a team to discuss each patient and their specific follow up needs.
Members of our ALS Clinic team from left to right: Kat Safavi, LCSW; Caroline Snell, MPA ; Emily Ripps, RN; Caroline Crooms, MD; Stephen Scelsa, MD; Kayvan Freeman, RN (ALS Association of NYC); Karen Ball, MPA, MS, CCC-SLP; Yajaira Pocchia, OT; Nommel Raymundo DPT; Daniel MacGowan, MD; Dave Lasko, RT.
Care Coordinator Caroline Snell elaborates on these challenges by saying, “We have to work with the system and around the system to get them everything they need to be as comfortable as possible for as long as possible.”
Social Worker Kat Safavi, LCSW, agrees and adds that another important part of the job is to “provide a safe space for patients, caregivers, and family to process the diagnosis, adjust to changes in functional status, consider goals for care and quality of life, and cope with disease progression.”
Two of the team members, Co-Director Stephen Scelsa, MD, and Speech Therapist Karen Ball, have been with the program since its inception. In August, the team welcomed Caroline Crooms, MD, a Neurologist who is also trained in Palliative Care. The current ALS Team at Mount Sinai Union Square has over 70 years of accumulated experience treating patients with ALS.
The ALS team works closely with the ALS Association-New York Chapter to provide access to support groups and additional resources for patients.
For Emily Ripps, Nurse Manager for Neurology and Neurosurgery, her connection to ALS began during childhood when her next-door neighbor, a single mother of two young children, was diagnosed with ALS and passed away within the year.
“It’s a devastating diagnosis because you have little time to take it in and process it. It requires rapid acceptance on the part of the patient and family members, and we have a dedicated, amazing team who treats them with dignity and gives them hope.”
Thanks to this amazing team for everything they do.