The Lighthouse

                                                Coastal Empire Polio Survivors Association, Inc.

                                              Newsletter, November/December, 2007

                Shining light on post-polio health 

               www.coastalempirepoliosurvivors.org

   _________________________________________________________________________________________

The President’s Message: 

     It has been an honor and a blessing to be your president for the past two years. This is not goodbye…

I will be actively serving you on the Executive Board continuing my work as Chair of Polio Awareness, Historian and working with Jim Veccia on CEPSA’s website. Over the years, each President has brought CEPSA to new heights which set the stage for the two years I served as President. I am looking forward to what 2008 will bring with our new President, Sandra Bath. 

     When I challenged our members to come up with ways we could implement CEPSA’s purpose in 2006, I never dreamed that we would see such overwhelming results. We literally put CEPSA on the map in Savannah with our map project; Savannah’s Historic District Navigational Guide for Wheelchairs and Scooters. The map shows the accessible path to tour the Historic District and on the back are listed 46 accessible restaurants in the area. CEPSA had several articles in the newspaper in 2006 and 2007 about this project. CEPSA’s Map Project Chair, Dan Shehan has been elected as Vice-Chairman of Savannah-Chatham Council on Disability Issues. Dan reports that there are an estimated 1000 curb cuts that will be installed in the Historic District by the end of the year. Several city officials have told Dan that this renewed interest in making Savannah’s Historic District accessible is a direct result of CEPSA’s positive approach with the map that has brought new awareness of the great need for accessibility in the Historic District. We are currently working on our third edition of the map because of all the numerous curb cuts that are being installed and other accessible restaurants that are requesting to be included on the back of the map. On an even broader scope, the Disability State Conference will be held on December 5th - 7th  in Savannah this year.  CEPSA has certainly helped to make Savannah more accessible for us and people with disabilities who visit our beautiful city to be safer and more comfortable.

     Another part of our purpose is Polio and Immunization Awareness. In 2006 CEPSA partnered with 

the Chatham County Health Department, Everybody Counts Immunization Coalition for our 5th grade poster contest, which helped students to see the importance of children receiving all doses of their immunizations. Sandra Bath was Chair. This year CEPSA joined Post-Polio Health International to declare September as polio awareness month. I applied for proclamations from the Governors of Georgia, and South Carolina and the Mayor of Savannah. Governor Sonny Perdue and Governor Mark Sanford proclaimed September as POLIO AWARENESS MONTH, and Mayor Otis Johnson proclaimed September as POLIO VACCINE AWARENESS MONTH in Savannah. CEPSA also joined Post-Polio Health International and Polio Survivors around the world during the week of October 14 - 20, 2007 to declare, WE’RE STILL HERE! Dan Shehan and I spoke about the campaign on Mid-Morning Live and CEPSA had an article in the Savannah Morning News.

     These projects address much of CEPSA’s purpose, so I formed the following committees to continue this important work.

• Accessibility Awareness Committee Chair: Dan Shehan
• CEPSA also partners with Living Independence for Everyone, Inc. (L.I.F.E.), and Savannah-Chatham Council on Disability Issues to address accessibility issues in Savannah.
• Immunization Awareness Committee Chair: Sandra Bath
• CEPSA partners with Everybody Counts Immunization Coalition, Marianne Pappas, Director of Coastal Health District Immunization Coordinator and the Glynn County Immunization Coalition. Ruth Parham is CEPSA’s Point Person for Living Independence for Everyone (L.I.F.E.) and the Public Polio Education Representative with the Immunization Coalition in Brunswick.
• Polio Awareness Committee Chair: Diane Davis
• CEPSA is a member of Post-Polio Health International and participates in their Campaigns and in local and surrounding area Health Fairs.

     These projects have also helped to implement CEPSA’s first and most important purpose; to locate polio survivors and provide them with Post-Polio information and CEPSA’s monthly newsletter. In addition to the projects, our members have been posting flyers and giving out brochures. As a result, we have almost doubled CEPSA’s membership to 98 polio survivors over the past two years in Georgia and South Carolina.

     This brings us to the “Heart of CEPSA … our Care Teams.” Many of our members live out of town and can not attend our meetings so I developed the Care Team system in 2006 to assure that every polio survivor member is connected to CEPSA by their Care Team Leader. Every member is important to CEPSA! The Executive Board and members sincerely want to know how you are doing and how CEPSA can be of help to you. This care team strategy has the potential to separate CEPSA from your average support group, however, it takes us all working together for this process to be successful. We need to keep our team leaders informed when we have health and other concerns, or concerns of our family members so the Board will know how CEPSA can help.

     Another project we had in 2006 was the Health Data Project. Chair: Cheryl Brackin. These packets include information to inform our families and physicians of specific health care, and polio and post-polio needs in the event of an emergency. I started New Member packets that include CEPSA and Post-Polio information and in 2008 the health information will be included in the New Member Packets.

• New Member Committee Chair: Beverly Jarvis.

     If you are interested in serving on any of the new or existing committees, please notify one of the officers. The existing committees are listed in the October minutes in this newsletter.

     I am looking forward to seeing everyone at CEPSA’s 10th Annual Holiday Banquet on Saturday, December 1 at the Hilton Garden Inn at 12:00. If you have not been contacted by your Team Leader, and you would like to attend, please call me at 355-1221 before November 28.

It was polio that brought us together, but it’s friendship that holds us together.

God Bless…

Diane Davis, President

Our deepest condolences to Jim and Gigi Veccia in the death of their brother-in-law.

Our deepest condolences to the family of Lamar Jackson, a fellow polio survivor and member of CEPSA.

Member Concerns

Dale Merritt surgery

Michelle Robertson’s mother

Velma Underwood and her family

Beverly Polin is recovering from a fall and illness.

Please remember these friends in your prayers.

CEPSA Welcomes Our New Members!

Danny Jenkins            Barry Turner           Harvey Varnadue               Sharott Richter

Alma Stanley              Helen Thorpe         Catherine Brown                 Eileen Boyle

Coastal Empire Polio Survivors Association, Inc.

General Meeting Minutes

October 27, 2007

     Vice President Lorraine Frew opened the meeting at 10:40 AM and welcomed all members and guests present.  We said the Pledge of Allegiance. Cheryl Brackin gave the inspiration.  She read two passages from Warm Springs: Traces of a Childhood at FDR’s Polio Haven by Susan Richards Shreve and related it to our group.

     She then introduced Dr. Paul Bradley, Director of the St. Joseph’s/Candler Medical Group, who spoke on Aging with Post-Polio Syndrome.  He presented a brief overview of the causes, symptoms, treatments that have been tried in the past and current research.  He stated that we know more about the disease than the physicians do because we are experiencing it.  He said that one theory is that we have always functioned at a lower level than the general population. We then became weaker as we aged.  He did an excellent job explaining everything to us.

      After a short break, Lorraine Frew called the business meeting to order. The minutes of the June and September meetings were approved as written. Marty Foxx gave the Treasurer’s Report.  She announced that she has five copies of Managing Post-Polio by Dr. Lauro Halstead for sale for $9.00 each.

Polio Awareness Reports:

• Junie Parham pushed Ruth Parham three miles in the March of Dimes Walk and Stewbilee on October 13, 2007.
• Janet DiClaudio represented us at the River’s Edge Active Aging Health Fair.  Several people stopped at the booth.  Four people took maps. 
• Post-Polio Health International had a world-wide e-mail campaign October 14-20, 2007.

Care Team Reports:

• Ruth Parham reported that Hattie Evenson will return at the next meeting. 
• Velma Underwood’s niece died and her nephew had a massive heart attack.

•  Dolores McIntyre’s husband is very ill.
• Janet DiClaudio reported that new member, Elaine Wilson, has not been able to attend meetings because of illness.  Her problem was identified and corrected and she plans on joining us soon.
• President Diane Davis has been ill.

Cheryl Brackin introduced our visitors, two of whom were here because of the “We’re Still Here…” article in the Savannah Morning News.  

Our Annual Banquet will be held on December 1, 2007 at the Hilton Garden Inn on Abercorn Street in Savannah, Georgia.  The entrée’ choices are grilled chicken, beef tips on rice, and pan-seared tilapia.

Jim Veccia, Chairman of the Bylaws Committee, briefly reviewed the goals and changes made that were printed in the October newsletter.  A quorum was verified and the Bylaws were approved as written.  Each member will receive a final draft next month.

Janet DiClaudio, Chairman of the Nominating Committee, presented the slate of candidates, which was passed unanimously. 

The 2008 officers are:

President  - - - - - Sandra Bath                           Vice President - - Lorraine Frew

Secretary - - - - -  Adrienne Stallworth                Treasurer - - - - -  Marty Foxx

The committee chairpersons are:

Publicity - - - - - Cheryl Brackin                            Newsletter - - - - - Jim Veccia

Mailing - - - - - - Beverly Jarvis                             Fund-Raising - - -Richard Graham

Hospitality - - -  Janet DiClaudio                          Members-at-Large - - Jim Veccia and Janet DiClaudio

History - - - - - - Diane Davis                                Website - - - - - - - Jim Veccia

Accessibility Awareness - - - Dan Shehan           Immunization Awareness - -Sandra Bath

Polio Awareness - - - - - - - - Diane Davis

Care Teams - - -Betty Goff and Lavonne Calandra

Photographer / Videographer - - - - Junie Parham

The meeting was adjourned at 12:30 PM. 

Respectfully submitted.

Janet DiClaudio, Secretary 

Attendance

Cheryl Brackin                 B. J. Vance                      Barry Fernandez              Lorraine Frew

Betty Goff                        Penny Felder                    Marty Foxx                     Lucy Behr

Janet DiClaudio                Beverly Jarvis                   Danny Jenkins                 Gene Jarvis

Bob Parkhurst                  Sandra Bath                     Dot Parkhurst                  Sally Luck

Jim Veccia                        Ed Luck                          Nancy Hess                     Richard Hall

Steve Hess                       Ruth Parham                    Sher Blackwelder             Junie Parham

Dave Vance                     Sissy Morel                      Richard Graham

November                                                   December

Hilda Fields -- 25                                      Diane Davis – 27                      

Judy Frick -- 23                                        Dianne Falgiani -- 2

Deloris Manor – 21                                  Betty Goff -- 22

Velma Underwood – 26                            Sally Luck -- 15

THANK YOU

The gift of stamps for mailing your newsletter would be greatly appreciated

The company below was briefly discussed at the October meeting. You might be interested in

looking into the services offered by the company.

Life Lifts LLC Independent Living Aids
37 Hazzard Creek Village, Suite 2
Ridgeland, SC 29936
843-987-3300
(located on Rt. 170 between Bluffton & Beaufort, SC)
Hours: Mon.-Fri., 9-5 and Sat., 10-2
Web address LifeLifts@comcast.net

We’re still here!

October 14-20th, the dates of the WE'RE STILL HERE campaign, is now in the past, but we are still here, and we have work to do. Polio survivors world-wide have written letters to the editors of their newspaper and marched in the streets of their towns to proclaim the message:  We’re still here!  Have you written your "Letter to the Editor"? Here are ten reasons why everyone should do this now!

10. Time to bury those '40's and '50's March of Dimes images of polio survivors as helpless, needy children.

9. To wake 'em up to this thought: disability is NOT dismissability!

8. Hey-guess what, professor-that super teacher in the classroom next to yours could be a polio survivor!

7. Just one more way to beat the drum for better, more affordable health care.

6. 'Cause we all deserve a barrier-free world!

5. To give another push toward worldwide poliovirus eradication.

4. Where doors are closed, let there soon be a way in. A-C-C-E-S-S!

3. Surprise! There are as many as 20 million of us worldwide, from toddlers up!

2. Part of the glue that holds our communities together? US!

1. And the Number One Reason to send a WE'RE STILL HERE Letter-to-the-Editor:
                                   If not us, then who?

PHI has received word from many states including Alabama, Arkansas, California, Georgia, Illinois, Kansas, Maine, Michigan, Minnesota, Missouri, Nebraska, New York, Pennsylvania, Virginia, as well as Australia and Brazil that letters have been sent.

Members of the European Polio Union (EPU) paraded in the centre of Brussels on October 16, 2007 to bring more attention to the needs of people with polio in Europe.

Member states of the EPU are Belgium, Denmark, England, France, Germany, Hungary, Ireland, Italy, The Netherlands, Spain, and Switzerland.  Prior to the rally, the groups gathered the signatures of 75 Members of the European Parliament (MEP) in support of the cause.

What can you talk about in your letter?                                                                                                                                                                        PUSH ACCESS. Access can mean two things. For one, it has to do with having a barrier-free world-curb cuts, ramps, wide aisles, automatic doors, that sort of thing. This is beneficial for everyone-people with disabilities, the elderly, mothers pushing strollers, shoppers – who wouldn't rather be able to move freely from place to place, be able to reach what they need? The other refers more to being able to compete on a level playing field, as in access to education, to jobs, to medical assistance, to opportunity.  

SHARE YOUR PHILOSOPHY.

Point out, for example, that your success in life had something to do with expectations; explain the importance of challenging the myth that people with disabilities can't do many things.

TALK ABOUT REHAB.

Mention the importance of rehabilitation and how spending adequate time in rehab helped you.

Connect this to how brief current rehab stays are.

EXPRESS HEARTFELT GRATITUDE.

If you're a survivor, why not thank your spouse, your children, your rehabillitation physician, the nurse in your unit, whoever-

and say WHY. If you are the child of a survivor, explain what you learned from your parent who had polio. Everyone relates to such feelings.

This article was copied from the Polio Health International on-line Newsletter.

By Nancy Baldwin Carter

http://www.post-polio.org/WereHereTalking.html

Global Case Count, November 20, 2007

                Famous Polio People    

Ray Peterson was born April 23, 1939 in Denton, TX. He spent much of his childhood recovering from polio, and during an extended stay in a nearby treatment facility he began performing for his fellow patients. As Peterson's health returned he began singing professionally in local clubs. Many will remember his rock and roll hits from the 1950s, "Corina, Corina" and "Tell Laura, I Love Her."

CONTRIBUTIONS
The Coastal Empire Polio Survivors Association is a non-profit corporation which is tax exempt under IRS code 501c(3). We have no paid employees, only volunteers dedicated to helping all polio survivors.
Your financial support is appreciated at any level suggested below:
 * CEPSA Member - $15.00 annual voluntary donation
 * CEPSA Supporter - $25.00    $50.00    $100.00    $300.00
 * CEPSA Memorial or Honor Gift -   any amount

 * CEPSA Sponsor –   any amount
 
Your contributions are tax deductible and will be acknowledged appropriately.
Please complete this form and mail it along with your check to: CEPSA, Marty Foxx, 23 East 61st Street, Savannah, GA 31405.

 Name  __________________________________________________

 Address   ________________________________________________

 City  ___________________   State_____________ Zip ___________

 Phone  _______________________  E-mail _________________________________

 Thank you for your support and encouragement.

Coastal Empire Polio Survivors Assn., Inc.

112 Van Nuys Blvd.

Savannah, GA 31419