Amyotrophic Lateral Sclerosis Association

THE GREATER PHILADELPHIA CHAPTER OF THE ALS ASSOCIATION (THE CHAPTER), A PENNSYLVANIA NOT-FOR-PROFIT CORPORATION, IS A CHAPTER OF THE ALS ASSOCIATION (ALSA), A NATIONAL NOT-FOR-PROFIT ORGANIZATION. THE CHAPTER REPRESENTS ALSA IN EASTERN PENNSYLVANIA, SOUTHERN NEW JERSEY AND DELAWARE IN PROVIDING SERVICE TO PATIENTS WITH AMYOTROPHIC LATERAL SCLEROSIS (ALS) AND THEIR FAMILIES, PROVIDING EDUCATION AND INFORMATION TO THE PUBLIC ABOUT ALS, AND FUNDING RESEARCH RELATED TO ALS.

CARE SERVICES:THE GREATER PHILADELPHIA CHAPTER PROUDLY OFFERS COMPREHENSIVE SUPPORT AND RESOURCES FREE OF CHARGE FOR PATIENTS DIAGNOSED WITH ALS AND THEIR FAMILIES AND CAREGIVERS, THROUGH THE LEA R. POWELL ALS PATIENT SERVICES PROGRAM. WE STRIVE TO PROVIDE ASSISTANCE TO PATIENTS AND MEMBERS OF THEIR SUPPORT NETWORK STRUGGLING WITH ISSUES RELATED TO ALS. OUR SERVICES INCLUDE:ALS TREATMENT CENTERS - THE GREATER PHILADELPHIA CHAPTER IS PROUD TO SUPPORT SIX ALS ASSOCIATION-CERTIFIED MULTIDISCIPLINARY CENTERS FOR THE DIAGNOSIS AND TREATMENT OF ALS. THE CENTERS PROVIDE SPECIALIZED ALS CARE, WITH PATIENTS SEEING UP TO A DOZEN SPECIALISTS IN A SINGLE VISIT.RESOURCE GROUPS - THE GREATER PHILADELPHIA CHAPTER HOSTS RESOURCE GROUPS THROUGHOUT OUR SERVICE REGION TO PROVIDE A FORUM FOR PATIENTS, FAMILIES AND CAREGIVERS TO EXCHANGE EXPERIENCES, RESOURCES AND IDEAS. WE ALSO PROVIDE RESOURCE GROUPS SPECIFICALLY FOR CAREGIVER AND BEREAVEMENT SUPPORT. ALL RESOURCE GROUPS ARE FREE OF CHARGE FOR PATIENTS, CAREGIVERS AND FAMILY MEMBERS. VAN TRANSPORTATION - THE ALS ASSOCIATION GREATER PHILADELPHIA CHAPTER'S MIKE KILPATRIC TRANSPORTATION PROGRAM PROVIDES TRANSPORTATION FOR PEOPLE WITH A DIAGNOSIS OF ALS WHO ARE IN POWER WHEELCHAIRS AND DO NOT HAVE SUITABLE TRANSPORTATION OF THEIR OWN. ALL ALS TRANSPORTATION IS OFFERED FREE OF CHARGE. PRIORITY IS GIVEN TO INDIVIDUALS THAT HAVE ALS CLINIC OR MEDICAL-BASED APPOINTMENTS.RESPITE CARE - LIMITED HOURS OF HOME CARE ARE OFFERED FOR PATIENTS TO PROVIDE RESPITE FOR FAMILY MEMBERS WHO SERVE AS FULL-TIME CAREGIVERS TO A RELATIVE WITH ALS. HOWARD I. ABRAMS IN-HOME CARE PROGRAM - THIS PROGRAM WAS DEVELOPED IN 1993 TO PROVIDE ASSISTANCE AT HOME FOR INDIVIDUALS WHO HAVE A DIAGNOSIS OF ALS AND NEED HELP WITH PERSONAL CARE (BATHING, DRESSING) AND CANNOT AFFORD TO PAY FOR THESE SERVICES PRIVATELY. THE ABRAMS PROGRAM PROVIDES SERVICE TO PATIENTS THROUGHOUT OUR ENTIRE SERVICE AREA, INCLUDING EASTERN PENNSYLVANIA AND SOUTHERN NEW JERSEY AND THE STATE OF DELAWARE. HOWARD'S SON JEFF AND HIS WIFE MARGARET CONTINUE TO SUPPORT THE PROGRAM THROUGH AN ANNUAL LEAD GIFT. SERVICE, PER FAMILY, CAN RANGE FROM 2 TO 12 HOURS WEEKLY. THE ALS ASSOCIATION CONTRACTS WITH A NUMBER OF HOME HEALTH CARE AGENCIES THAT PROVIDE CUSTODIAL CARE BY A HOME HEALTH AIDE. CUSTODIAL CARE INCLUDES SUCH THINGS AS BATHING, DRESSING, AND FEEDING. IT DOES NOT INCLUDE SUCH THINGS AS VENTILATOR CARE, GIVING MEDICATIONS OR INJECTIONS, UTILIZING A SUCTION MACHINE OR ASSISTING WITH FEEDING TUBES. THE SCOTT A. MACKLER, M.D., PH.D. ASSISTIVE TECHNOLOGY PROGRAM - ASSISTIVE TECHNOLOGY CAN ENHANCE THE QUALITY OF LIFE OF A PERSON WITH ALS BY TAPPING INTO THEIR ABILITIES, PROVIDING NEW AND ALTERNATIVE MEANS TO STAY ACTIVE AND CONTINUE TO PARTICIPATE IN EVERY DAY ACTIVITIES. WITH ALL THE LATEST DEVELOPMENTS MADE IN THE FIELD OF REHABILITATION TECHNOLOGY IT IS OFTEN CHALLENGING TO KNOW WHAT APPROPRIATE TECHNOLOGY IS AVAILABLE TO MEET THE INDIVIDUAL'S NEEDS. THE ALS ASSOCIATION'S ASSISTIVE TECHNOLOGY PROGRAM PROVIDES TRAINED TECHNOLOGISTS THAT ASSIST PERSONS WITH ALS WITH THE DAUNTING TASK OF IDENTIFYING AND APPLYING ASSISTIVE DEVICES. THESE DEVICES MAY INCLUDE COMMUNICATION TECHNOLOGY, TELECOMMUNICATIONS, COMPUTER ACCESS, ELECTRONIC AIDS TO ASSIST WITH DAILY LIVING, AND ASSISTANCE WITH SEATING AND MOBILITY ISSUES.MARJORIE SHIMER DURABLE MEDICAL EQUIPMENT LOAN PROGRAM - THE ALS ASSOCIATION GREATER PHILADELPHIA CHAPTER RECOGNIZES THE NEED OF ALS PATIENTS FOR EXTENSIVE DURABLE MEDICAL EQUIPMENT (DME). IT ALSO UNDERSTANDS AND APPRECIATES THAT NOT ALL PEOPLE HAVE INSURANCE OR THE FINANCIAL MEANS TO PAY FOR SUCH EQUIPMENT. FOR THIS REASON, IT HAS ENDEAVORED TO ESTABLISH A PROGRAM THAT GIVES INDIVIDUALS WITH ALS ACCESS TO EQUIPMENT THEY NEED AT NO COST TO THEM.THE ACCESSIBILITY PROGRAM - THE ALS ASSOCIATION, GREATER PHILADELPHIA CHAPTER RECOGNIZES THE NEED OF PERSONS WITH ALS FOR MODIFICATIONS TO THEIR HOMES TO ENABLE SAFE ENTRANCE FOR WHEELCHAIRS AND SAFE ACCESS TO OTHER LEVELS OF THEIR HOMES. IT ALSO UNDERSTANDS AND APPRECIATES THAT NOT ALL PEOPLE HAVE INSURANCE OR OTHER MEANS TO PAY FOR NECESSARY MODIFICATIONS. FOR THIS REASON, IT HAS ENDEAVORED TO ESTABLISH A PROGRAM THAT GIVES PERSONS WITH ALS ACCESS TO RAMPING, STAIR GLIDES, WHEELCHAIR LIFTS AND EMERGENCY CALL DEVICES AT NO COST, OR REDUCED COST, TO THEM.

EDUCATION:INSERVICE EDUCATION PROGRAMS - THE GREATER PHILADELPHIA CHAPTER OFFERS IN SERVICE EDUCATION SESSIONS TO ASSIST HEALTHCARE WORKERS IN THE TREATMENT OF ALS PATIENTS. SESSIONS ARE ONE HOUR IN LENGTH, AND ARE APPROPRIATE FOR THE FOLLOWING AUDIENCES: REGISTERED NURSES, SOCIAL WORKERS, PHYSICAL AND OCCUPATIONAL THERAPISTS, DIETICIANS, SPEECH THERAPISTS, MENTAL HEALTH WORKERS, HOME HEALTH AIDES, CERTIFIED NURSING ASSISTANTS, LICENSED PRACTICAL NURSES, HOSPICE CHAPLAINS AND HOSPICE VOLUNTEERS, WORKING IN THE FOLLOWING SETTINGS: HOSPICE CARE, HOME CARE, NURSING HOME AND SKILLED CARE FACILITIES, LIFE CARE COMMUNITIES AND ACUTE-CARE HOSPITALS.CARE CONNECTION - WHEN ALS STRIKES, FRIENDS AND FAMILY MEMBERS OFTEN OFFER AND WANT TO HELP. AT THE SAME TIME, THE ALS FAMILY MAY NOT BE CLEAR ABOUT THE HELP THEY WANT OR NEED. FORTUNATELY, THE ALS ASSOCIATION CAN OFFER THE COMMUNITY GROUP A BLUEPRINT FOR HELPING A FAMILY THAT IS TAILORED TO THEIR SPECIFIC NEEDS, WHILE AVOIDING UNWANTED INTRUSIVENESS. THIS OPTION ALSO SHARES THE CARE RESPONSIBILITY AMONG A LARGER GROUP OF PEOPLE. CALLED CARE CONNECTION, THIS HELPING APPROACH HAS AIDED MANY ALS FAMILIES AND COMMUNITY CAREGIVERS AS THEY DELIVER QUALITY SUPPORTIVE CARE. ALS PATIENT AND CAREGIVER RESOURCE MANUAL - THE GREATER PHILADELPHIA CHAPTER OF THE ALS ASSOCIATION IS EXTREMELY PLEASED AND PROUD TO PROVIDE AN ALS PATIENT AND CAREGIVER RESOURCE MANUAL. A COPY OF THIS MANUAL IS AVAILABLE AT NO CHARGE TO ALS PATIENTS AND FAMILIES IN OUR SERVICE AREA. THE MANUAL IS AIMED AT PROVIDING ALS-RELATED INFORMATION FOR THOSE LIVING WITH ALS WITH AN EMPHASIS ON LOCAL SERVICES AND RESOURCES.

RESEARCH:THE GREATER PHILADELPHIA CHAPTER OF THE ALS ASSOCIATION'S EFFORTS ARE FOCUSED TOWARD A SINGLE VISION FOR THE FUTURE: A WORLD FREE FROM ALS. THE CHAPTER DEDICATES FUNDS EACH YEAR TOWARD RESEARCH INTO THE CAUSE, CURE, AND TREATMENT OF THE DISEASE. AN ALSA-CERTIFIED CENTER OF EXCELLENCE, HERSHEY MEDICAL CENTER, REGULARLY PARTICIPATES IN CLINICAL TRIALS. THE CHAPTER ALSO HAS ESTABLISHED NEW ALS CLINICS IN PARTNERSHIP WITH JEFFERSON UNIVERSITY HOSPITAL, LEHIGH VALLEY HOSPITAL, GEISINGER MEDICAL CENTER, AND JERSEY SHORE UNIVERSITY MEDICAL CENTER TO BETTER SERVE PATIENTS THROUGHOUT OUR SERVICE AREA.