The Beginning of the Coastal Empire Polio Survivors Association

1997-1999

 

 

Shirley Moorer Carnell, RN, had a dream of starting a post-polio support group in Savannah, Georgia.  She worked with Lorraine Frew, RN, at Georgia Regional Hospital.  After Lorraine began having some health problems, Shirley noticed her colleague’s reduced stamina and began talking about starting a support group for individuals such as themselves.  Shirley met Cheryl Brackin, polio survivor and Savannah speech pathologist, at a Warm Springs satellite clinic held by Dr. Paul Peach in Statesboro 1/9/97.  She later called Cheryl to share her plans for a group.  On 3/18/97 Shirley, Lorraine, Cheryl, and Lila Mae Kicklighter, a long-time advocate for individuals with disabilities, met at the office of Living Independence for Everyone, Inc. (LIFE) on Travis Street.  That night the Coastal Empire Polio Survivors Association (CEPSA) was begun.  Shirley contacted the Savannah Morning News and asked for an article about post-polio syndrome and our plans to begin a local support group.  The lengthy article was accompanied by a striking picture of polio survivor Eileen Renich swimming in a pool for exercise.  The date of the initial meeting was announced.  On 4/22/97 the GI waiting room of the Candler Professional Building was filled with polio survivors and family members, approximately 35 people.  No one was more delighted with the turnout than Shirley.  Her dream was on its way. 

                                                      Our Founders

       

    Shirley Carnell            Lorraine Frew                Cheryl Brackin

 

We began meeting on the 4th Tuesday night of each month at 7:00pm. Within a few months our group relocated to the Candler Heart and Lung Building, 2nd floor, room 2.  Lorraine copied numerous articles she and Shirley had collected, so that we could start educating about post-polio syndrome.  Cheryl consulted with the presidents of the Charleston, South Carolina and Atlanta post-polio support groups for ideas and suggestions.  Shirley had obtained many books on the late effects of polio, and we borrowed and showed a videotape on post-polio syndrome from Charleston.  There were several lunchtime meetings with Shirley, Cheryl, Judy Melroy, Charlene Brown, and Tina Settlemire, making further plans for the group.                                                              

  

Program meetings included speakers such as Dr. Ken Griffin (local internist), Dr. Robert Rollings (local cardiologist), Dr. Anne Thompson (RPT and professor in the Armstrong Atlantic State University Physical Therapy Department), Judy DeShea (OTR at Candler Hospital), Dr. Rita DiJokino (Armstrong nutrition professor), Doris Phillips (independent living co-ordinator of LIFE and polio-survivor), Police Officer Famble who discussed personal safety, Gloria Grizzle (the Department of Human Resources) who discussed the Americans with Disabilities Act, and Peter Brodhead of Brighter Day Natural Foods. 

 

The members, spouses, and friends began talking in small groups about post-polio symptoms and problems and sharing solutions.  We decided to share our information with the larger community when we scheduled a lecture “Polio: Second Attack” by Dr. Paul Peach, the former director of the Roosevelt Warm Springs Institute for Rehabilitation, on 10/25/97.  The session was held at the Marsh Auditorium at Candler, and we had more than 50 registrants.  A few nurses and OTs were present, but no local physicians attended.  We distributed flyers to the offices of physicians, vocational rehabilitation, LIFE, and other locations.  We publicized the event through the local media and had coverage on an evening WTOC news program.                                

 

The first slate of officers included Cheryl Brackin, president; Lorraine Frew, vice-president; Beverly Jarvis, secretary; George Frick, treasurer, and Shirley Carnell, founder-mentor.  In 1998 the executive committee developed our first bylaws.  CEPSA members, a determined though energy-deprived group, held several quite financially successful yard sales.  The funds were used for ongoing operation of the association.                       

 

From the beginning, Shirley wanted our group to become a non-profit organization, which would raise funds to assist polio survivors who had no or inadequate insurance to obtain treatment or needed equipment.     We requested information from the IRS office about the requirements for a nonprofit organization.  Our very dedicated George Frick began wading through the stacks of forms we needed to understand and complete.  We continued to increase our membership and publicize our group.  The executive committee decided that we needed to be certain we would remain a viable organization before applying for nonprofit status.                                                                                                                                                                                                                                                   

Our database included 80-90 names over the first two years of our existence.  We received many telephone calls from interested polio survivors in the early days of the group.  Shirley, Lorraine, and Cheryl talked to survivors and mailed information to them.  We told them about the post-polio clinics available in Georgia.  Many began attending our meetings.  Members, including George Frick, Sandra Bath, and Hugh Dunn, shared information by discussing books and articles and also ways for individuals with disabilities to obtain transportation.  Lorraine gave an overview of her trip to the Palmyra Polio Clinic developed in Albany, Georgia, by Dr. Peach.   

 

CEPSA connected with future medical professionals through the Physical Therapy Department at Armstrong Atlantic State University.  A master’s level PT student Carrie Scheberies included us in a survey for her post-polio syndrome study in December 1998.  The results were published in the International Journal of Rehabilitation Health. 

     

Cheryl, the first CEPSA president, joined the LIFE board and served as a liason between the two groups.  Pam Hodge, then-director of LIFE, spoke to our members in April 1999.  She encouraged us to become active in the disability rights movement in Savannah and across the state and country.  CEPSA’s involvement in the greater disability community included participating in LIFE’s First Freedom March down Bay Street in June 1999 and Disability Awareness Day at Memorial Health University in July 1999.  CEPSA members staffed a table and distributed packets to inform the medical community of our existence and efforts to locate polio survivors in Southeast Georgia and the Lowcountry of South Carolina.  That mission continues today.                         

                                         

                       

                                           Our Past Presidents

                  

                                                                                                      

                        Cheryl Brackin                                       Sandra Bath

                     1997, 1998, 1999,                               2000, 2001, 2008

                     2009, 2013, 2014

                                 

                         Beverly Jarvis                                     Janet DiClaudo

                          2002, 2003                                     2004, 2005, 2012                                                                                                                                                                                 

                                 

                         Diane Davis                                            Jim Veccia

                         2006, 2007                                            2010, 2011