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Clinical Services
Telephone: 215-762-5186
The team at the MDA/ALS Center of Hope is devoted to providing optimal care of individuals with ALS, and to participating in the search
for a cure through clinical research.
The medical staff consists of neurologists who are experts in the field of neuromuscular diseases. Their first goal is to determine the diagnosis
of amyotrophic lateral sclerosis. This will be done by performing a thorough neurological exam, requesting a variety of diagnostic tests, and
reviewing your clinical history. During your visits, they will respond to your questions, provide symptomatic treatments, discuss clinical
trials, and communicate with the other team members to ensure all recommendations are being incorporated into the treatment plan.
Clinical Nurse Coordinator: Mary Paolone, MS RN
The nurse coordinator will help to ensure that your questions and needs are addressed during your visit to the center. She will assess
your general medical status and take your vital signs. The nurse coordinator is also available in the office every day to assist with
questions, medical renewals, problems, or concerns you may have between appointments. In addition, she is involved in the current
clinical trials and is available if you would like to discuss or participate in any of the center's ongoing trials.
Mental Health Specialist: Marlene Ciechoski, MS, RN
The role of mental health specialist is to provide counseling to you and your family. She is also available to other healthcare providers
as a consultant on the psycho-social dynamics of ALS and can recommend strategies for the identified concerns. She works to develop and
initiate special programs and groups to educate and support families. Finally, the mental health specialist is involved in research investigating
the psychological and social effects of ALS on individuals and families, which helps the medical community at large to better understand the
emotional challenges of the illness and develop new approaches to care. She is available during your visits to the clinic and also on an as-needed
basis outside of the clinic.
Social Worker: Rhea Silverman, CSW, MS
The social worker is here to assist you in navigating the way through different agencies and your insurance company. She can act as a liaison
between you and your insurance company or case manager. She will work with you and your insurance agency to help you obtain services or
medical equipment ordered by the physician. She can also help you with understanding and completing the many forms and paperwork you will
encounter. These may include letters of medical necessity, short- and long-term disability forms, and transportation needs. The social worker's
purpose is to advocate on your behalf to assist you in meeting your medical and insurance needs.
Occupational Therapist: Mark Goren, MS, OTR/L
The occupational therapist is concerned with ensuring you remain as independent and safe as possible while performing the activities of daily living.
He will evaluate your arm strength and your ability to use your hands. His recommendations will then be made based on his findings and the information
you provide. He will often recommend adaptive devices or techniques to help you continue to do the activities you enjoy. You will be instructed on
exercises to do to help maintain flexibility and range of motion.
Physical Therapist: Sara Feldman, MA, PT, ATP
The physical therapist will see you at each visit for ongoing evaluation of your strength and mobility. She will address moving in bed, getting in and
out of chairs, walking, or using a walker or wheelchair. Two of the main areas that will be addressed are exercise and equipment. Exercise guidelines
based on your strength and energy level will be made. Stretching exercises will be encouraged to help maintain your flexibility and decrease muscle
cramping. Equipment recommendations will be made to help in maintaining mobility and independence. They may include a MAFO (molded ankle foot orthotic),
an assistive device for walking, a wheelchair, or other items for use during transfers. The main goal of physical therapy is to keep you at your highest
level of functioning for as long as possible. Recommendations will be made to ensure your safety and independence.
Speech/Language Pathologist: Donna Harris, MA, CCC
The speech language pathologist will monitor any difficulty you are having speaking or swallowing. She will assess your ability to communicate effectively
and make recommendations to address communication deficits if necessary. These recommendations may include assistive devices or alternate means of
communicating. Possible swallowing problems will be discussed as well as the anatomy and physiology of the swallowing process. Suggestions will be given
for diet modifications and safe swallowing techniques as needed.
Dietician/Nutritionist: Donna Mark, RD LDN
The registered dietician will meet with you to discuss your weight and nutritional status. One of her primary considerations will be to ensure you
are maintaining safe and adequate nutrition and hydration. Her evaluation will begin with a nutritional assessment which includes changes in body weight,
current nutritional status and present intake. Suggestions on dietary changes, recommendations on alternate routes of feeding and education on tube
feedings will be given as needed. It is her goal to assist you in preventing nutritional deficits while maintaining your quality of life.
Clinical Research Staff
Study Coordinators: Christine Barr, RN & Roseanne Sattazhan, RN
There are several ongoing clinical studies at the center. The clinical research staff is available to disseminate information about these current ALS
studies and provide further information to interested individuals. They will screen prospective participants, conduct the study sessions with those
individuals who meet the criteria, organize data and medical records, and attend communicate with other research staff throughout the country as indicated.
Administrative Assistant: Leslie Popolo
Contact the administrative assistant if you have questions concerning your appointment or transportation.
Infusion Nurse Coordinator: Keri Cain, BSN, RN
The Infusion Suite opened in April 2005 and since that time the suite has been able to grow and expand thanks to the work of many. We are now able to offer
infusion services for: immune globulin, cytoxan, tysabri, and several new headache protocols.
To learn more about what the staff and the role they play at the Center of Hope, click here.
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