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Volume 3 Issue 1
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Post-Polio Chronicles is a publication of the FDR PPS Foundation, Inc. and reflects the opinions of the authors and not necessarily the views of the FDR PPS Foundation. A qualified health care
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professional should be consulted before using any therapeutic practices or products discussed in this publication.
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CONTACT
Harold Roupe (Publisher):
706-444-5276
fdrpps@yahoo.com
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Please click the "down arrow" below to view the Newsletter contents.
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CONTENTS
1. Mission
2. ASSISTANCE
3. A Message From The Director &
Publishers Comments
4. Research
5. Questions
6. Letters
7. Support
8. Publishers Diatribe
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Have you survived polio?
Post-Polio Sequelae or the late effects of Poliomyelitis are unexpected and often disabling symptoms (overwhelming fatigue, muscle weakness, muscle and joint pain, heightened sensitivity to anesthesia, cold and pain, as well as sleep disorders, difficulty swallowing and breathing) these symptoms occur about 35 years after the polio virus attack in 75% of paralytic and 40% of ”non-paralytic“ polio survivors. If you are experiencing any of the above difficulties please seek the assistance of a qualified doctor.
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SUGGESTED REFERENCE MATERIAL
- Postpolio Syndrome by Julie K. Silver, MD and Anne C. Gawne, MD
- www.survivorsofpolio.com
- The Polio Paradox by Richard L. Bruno, H.D., Ph.D.
- Caring Today, 800-480-4851 This is for your caregiver, and you receive 6 issues for only $12.95. It is also available on line at no cost,
www.caringtoday.com
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MISSION
The mission of FDR PPS Foundation, Inc. is to provide support to those individuals suffering the late effects of Polio and or post-polio syndrome by providing education, assistance, and research. We propose to provide educational materials to people with post-polio syndrome, doctors and care givers. Informing people in need as to where they can obtain durable medical goods, ramps, home modifications, or any other assistance that will be needed by those in need will provide assistance. Our mission is not to provide research, but to establish a database, which can be accessed by those doing research, in an effort to eliminate duplication of efforts. This mission is not dedicated to any one local area, but to be an effort to provide education, assistance, and research nationally and internationally.
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ASSISTANCE
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Please participate and add your voice to this important issue!!! Thanks. CB
-Remember the National Chamber of Commerce is working hard to defeat ADA Restoration-
----- Forwarded Message ----
From: ADA Watch <JimWard@ADAwatch.org>
To: brophy@hargray.com
Sent: Wednesday, January 30, 2008 1:34:09 AM
Subject: Witnesses to House Labor Committee: Pass the ADA Restoration Act
From ADA Watch and the National Coalition for Disability Rights (NCDR):
Witnesses Call on House Labor Committee to Pass ADA Restoration Act
WASHINGTON, D.C. – Legislation is needed to reverse court decisions that have left most workers with disabilities without any on-the-job protections against discrimination, witnesses told the House Education and Labor Committee today.
The Americans with Disabilities Restoration Act (H.R. 3195), introduced by House Majority Leader Steny Hoyer (D-MD) and U.S. Rep. James Sensenbrenner (R-WI), would restore the original intent of the historic Americans with Disabilities Act. The bipartisan bill would reverse recent court decisions that have made it easier for employers to discriminate against workers with disabilities.
The Road To Freedom bus and traveling exhibit has been on the road promoting passage of the ADA Restoration Act. Here is what you can do to learn more and take action to restore civil rights protections for people with disabilities:
- Sign the Petition to restore the ADA at: http://www.democracyinaction.org/dia/organizationsORG/adawatch/petition.jsp?petition_KEY=589&t=roadtofreedom.dwt
- Urge Congress to pass the ADA Restoration Act at: http://www.democracyinaction.org/dia/organizationsORG/adawatch/campaign.jsp?campaign_KEY=6722&t=roadtofreedom.dwt
- View photos and descriptions of the Road To Freedom bus tour events across America at: http://adawatch.smugmug.com/gallery/2925333
- View samples of news coverage on the ADA Restoration Act generated by the Road To Freedom tour at: http://roadtofreedom.org/cs/press_room
With several rulings beginning in 1999, the Supreme Court dramatically narrowed the definition of who is protected under the ADA. The court held that disabled workers who are able to mitigate their impairments, such as by wearing hearing aides or taking medication, should not be considered disabled. In such cases, these workers would have no remedy under the law when they are discriminated against because of their disability. In other words, an employer could fire or refuse to hire a fully qualified worker simply on the basis of his or her disability, while contending in court that the worker is not ”disabled enough“ to qualify for protection under the law – a Catch-22 that workers’ advocates said today must be remedied.
Hoyer, who was the chief House sponsor of the ADA in 1990, testified that Congress needs to act to ensure that workers with disabilities are treated fairly in the workplace.
”The bill does not seek to expand the rights guaranteed under the landmark Americans with Disabilities Act. Instead, it seeks to clarify the law, restoring the scope of protection available under the ADA,“ said Hoyer. ”It responds to court decisions that have sharply restricted the class of people who can invoke protection under the law. And it reinstates the original Congressional intent when we passed the ADA.“
”Despite our progress, the courts – including the U.S. Supreme Court – have narrowly interpreted the ADA, limiting its scope and undermining its intent,“ Hoyer continued. ”We could not have fathomed that people with diabetes, epilepsy, heart conditions, cancer, and mental illnesses would have their ADA claims kicked out of court because, with medication, they would be considered too functional to meet the definition of ‘disabled.’“
Carey McClure testified that an initial job offer was revoked by General Motors because of his muscular dystrophy. But the courts ruled that because McClure had adapted to his condition by modifying the way he performed everyday tasks such as showering or brushing his teeth, he was not disabled and, therefore, not protected by the ADA.
”Even though GM revoked my offer because of my disability, GM’s lawyer started arguing to the federal courts that I didn’t have a disability at all,“ said McClure. ”Well, you can’t have it both ways – am I disabled or not? If I am, then the ADA should have been there to protect me. If I’m not, then I should be working…at GM right now.“
Andrew Imparato, president and CEO of the American Association of People with Disabilities, said that the initial promise of protecting disabled workers under the ADA has largely faded as a result of Supreme Court rulings.
”In 1990, the ADA was heralded as an ‘emancipation proclamation’ for people with disabilities,“ said Imparato. ”Seventeen years later, on account of judicial activism, we are far from having a law that can be counted on to safeguard the fair treatment of people with disabilities in the workplace.“
Robert Burgdorf, a law professor at the University of the District of Columbia, agreed and noted that fewer than one in ten ADA complaints is successful.
”Even a cursory review of the cases decided under the ADA reveals a plethora of court decisions in which people with conditions everyone thought were covered under the law when it was enacted have had their lawsuits thrown out of court based on technical, harshly narrow interpretations of what a ‘disability’ is,“ said Burgdorf.
”It is evident that the Supreme Court’s misinterpretation of Congress’s intent when enacting the ADA has left many Americans without protection from workplace discrimination,“ said Rep. Rob Andrews (D-NJ), chairman of the Subcommittee on Health, Employment, Labor and Pensions. ”Without question, Congress must act to rectify this mistake so individuals like Carey McClure can apply for a job without fear of being fired because of their disability.“
http://edlabor.house.gov
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A MESSAGE FROM THE DIRECTOR
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”WHATEVER HAPPENED TO WARM SPRINGS“
(Greg Schmieg)
Polio certainly doesn’t get the attention it used to during the 1930’s, 40’s and 50’s. It has all but faded from the front page of newspapers and medical journals, and if you were to ask most school children about it, they wouldn’t know what you were talking about. But that doesn’t mean polio has gone away. Not only are there thousands of polio survivors and people living with the symptoms of post-polio, but there are still new cases diagnosed around the world every day. To the very contrary, polio may have been forgotten by many, but it is not gone. That is understandable. Times change, the world moves on, and one epidemic is replaced by another and then another. Even the polio exhibit at the Smithsonian Museum of American History was called ”Whatever Happened to Polio“.
At the height of the polio epidemic, the drive to eradicate the disease was embodied by none other than the President of the United States, Franklin Delano Roosevelt. FDR and polio became almost interchangeable, you could not think of one without thinking of the other. The same was true for the little town in Georgia that FDR fell in love with and spent much of his time, Warm Springs. He purchased and created what was then called the ”Georgia Warm Springs Foundation“ as a place of healing…a place of healing for polio, because that was the illness that he and so many other ”polios“ struggled with, suffered through and endured. Without polio, most likely there never would have been a Georgia Warm Springs Foundation, which later became known as the Roosevelt Warm Springs Institute for Rehabilitation; and the history of rehabilitation would have been completely different. Warm Springs has always been a place of healing, and polio made it the birthplace of rehabilitation as we think of it today.
Although the numbers of polio patients served by the Institute has decreased considerably since the advent of the vaccines, to this day the Roosevelt Warm Springs Institute for Rehabilitation continues as a place of healing for all kinds of disabilities. The mission hasn’t changed even though the nature of the illness has. But that doesn’t mean that Warm Springs has forgotten about polio. To the contrary, the Institute is still focused on serving those living with polio. The names and faces of the doctors and therapists may have changed, but the desire to continue to be the ”living legacy“ of FDR is still strong. Polio is part of the Institute’s DNA, and it will always be. This past year, the Institute acquired the Smithsonian polio exhibit which is proudly displayed in Roosevelt Hall, and plans are currently underway to be the ”host“ site for the 10th International Polio Symposium in April 2009. As the Institute continues to move forward in this new century, and serve individuals with spinal cord injuries, the blind and deaf, and returning wounded warriors, it does so with it an undying commitment to polio…that will never change.
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COMMENTS
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(By the Publisher)
Most of you who read this newsletter over the years know that, since the death of Dr. Anne Gawne, others and I have worked with the leadership at Warm Springs and the Directors office in Atlanta to insure that Polio was never forgotten at the very location where it was the crowning achievement for the World. Doctors that were trained especially for treating polio no longer treated polio. The direction at Warm Springs changed or attempted to change to the treatment center for treating and rehabilitating sports injuries and rehabilitating people back into the job market. Polio was no longer set as a priority. Today is a new dawning at Warm Springs. For the first time in five years I can see a new birth at Warm Springs, the birth of a new Director, a new doctor who not only wants to treat polio survivors, but also has a strong desire to learn as much about polio as possible. I would recommend to anyone and everyone to come to Warm Springs for a check-up. The polio clinic is now open one day a week and is filling up very quickly, so make your reservation, appointment, as soon as possible. The staff at Warm Springs will make all effort to accommodate your every need. I do not want to make light of the other commitments at Warm Springs, because they are a much-needed necessity for the treatment of all people with disabilities. Yes I have changed my mind; Warm Springs will again become the shining star for the treatment of polio survivors.
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RESEARCH
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June 29, 2007
Kingfisher Americas, LLC
13201 Canyon Edge Tr., NE
Albuquerque, NM 87111
Hello. This is Herb Whitaker, CEO of Kingfisher Americas. Last Spring I talked with many of you regarding Kingfisher's need for participants in our Post-Polio micro-current electrotherapy (METIPP) study on fatigue, pain, and endurance. It is now one year later and the results are in! Attached is an informal summary of the results.
As a follow-up to this announcement, we will be mailing a comprehensive review of the METIPP study. In the meantime, please share this email and attachment with your contacts and support group members. Please let us know if we can help with the distribution.
Sincerely,
H.L. Whitaker, Jr., PhD
CEO
Kingfisher Americas, LLC
Post-Polio Fatigue Clinical Research
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We are excited to present highlights from Kingfisher Healthcare's International Out-patient PPS Study (METIPP) and our work in Post Polio.
Approximately one year ago I contacted you regarding the recruitment of Post-Polio subjects for a microcurrent electro-therapy outpatient study on pain, fatigue, and endurance. At that time we also committed to inform you and your support group of our results. We are very pleased, as are our study participants, with the success micro-current electrotherapy (MET) achieved in this study treating post-polio fatigue, pain, and stamina.
Thirty individuals were successfully recruited from four countries, the US, England, Holland, and Belgium. Of those thirty, 25% were dropped from the study due to a variety of issues, such as a medicine change, unrelated accidents and illness etc. There were no side effects observed or reported.
The study was twenty four (24) weeks in duration. The first twelve (12) weeks we classified as therapy and the second twelve (12) weeks were maintenance. The individual therapy sessions were five days per week for one hour each day. The reporting forms were completed every two weeks initially and then every four weeks thereafter.
Fatigue was reduced greater than 30% for more than 50% of the participants, with just 14% having no improvement, during the therapy phase of the study (first 12 weeks). Pain was reduced greater than 30% for more than 50% of participants with 28% having no improvement. Endurance was increased greater than 40% for more than 50% of participants with 21% having no improvement. Each of these findings is statistically significant.
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For the maintenance phase of the study (second 12 weeks), fatigue continued to improve and was reduced to 43% overall. Pain results showed a slight regression to 34%. Endurance remained steady at greater than 40%. Each of these findings is statistically significant. Please note the results in graphical form below.
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MET therapy appears to be but one positive step in many towards improvement of the Post-Polio condition. Regrettably there are no cures.
Within the next few weeks Kingfisher will mail you a report on the METIPP study results that will present a more detailed breakdown of Kingfisher's findings for MET's impact on Post-Polio pain, endurance, and fatigue. Please share this with your support group members. Or, if you prefer, we can do that for you but we will need your help as to the best way to send it to them.
Kingfisher is working diligently to commercialize this technology and is expecting to have product available in the US by year end.
Sincerely,
H.L. Whitaker, Jr., PhD
CEO
Kingfisher Americas
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I received the following article from Mr. Herb Whitaker. It sounds like something that may be of interest to you. I have tried a TENS unit and found the electrical impulses to be cruel and unusual punishment and would not recommend a TENS unit to any polio survivor. More from Mr. Whitaker to follow.
Kingfisher Healthcare: The Right Treatment for You
By Herb Whitaker, PhD
To many, the polio epidemic is a forgotten disease tucked away in the history books. Many forget that at its peak, polio affected thousands in the United States alone causing severe pain, breathing difficulties, paralysis and, in many cases, death. Although polio has been essentially eradicated, over the past 25 years, polio survivors have started to experience a range of lingering side effects, significantly affecting their quality of life. These resurfacing side effects of polio, which include pain, fatigue, and weakness, have been characterized by medical experts as post-polio syndrome (PPS).
Polio survivors experiencing these debilitating symptoms have been and continue to be misdiagnosed by their medical practitioners because they demonstrate similar symptoms to chronic fatigue syndrome (CFS), fibromyalgia, and other incurable conditions. Furthermore, today’s treatments for patients suffering from PPS are limited, expensive, and ineffective. To address this problem, Kingfisher Healthcare has developed an innovative device designed to improve the quality of life for individuals suffering from PPS as well as a variety of other chronic conditions.
Kingfisher Healthcare, headquartered in Belgium with U.S. subsidiary Kingfisher Americas in Albuquerque, New Mexico, is committed to providing proprietary natural energy devices and accessories to treat symptoms of chronic conditions including post-polio syndrome, fibromyalgia, multiple sclerosis, and chronic fatigue syndrome.
The medical professionals at Kingfisher have deviated from traditional, pharmaceutical based treatments to develop a device called KFH Energy. KFH Energy utilizes a unique form of micro-current electro therapy, called Bio-electric Stimulation Therapy (BEST), to improve pain associated with chronic conditions. BEST takes a very specific form of electro therapy to deliver extremely small amounts of current to the body. The technology mimics what happens within human cells by working to enhance the physiological processes, ultimately boosting energy and restoring homeostasis.
KFH Energy and BEST are among a handful of electro therapy treatments available in the marketplace. Compared to other devices that use Transcutaneous Electrical Nerve Stimulator (TENS), BEST directly targets the physiological-deficiencies in a patient, and thus over the course of treatment, reduces pain and increases functionality. Devices that use TENS only relieve an individual’s symptoms while a treatment is in session. Once a session is completed, the individual will continue to experience the debilitating symptoms -not so with BEST.
Unlike traditional electro therapy devices that are large and bulky, KFH Energy is small, portable and intended for home use. Sleek and modern, the device is convenient, easy-to-use and has a patented touch screen panel that allows patients to monitor and control their treatments.
Recently, post-polio syndrome has garnered the attention of numerous medical practitioners including, physicians, doctors of osteopath, acupuncturists, chiropractors and physical therapists. Kingfisher works closely with these medical professionals as they have taken a special interest in providing holistic and alternative forms (non-drug) of treatment for their patients. Clinical experience in Europe with KFH Energy has also shown that the device has no demonstrated side-effects and is very safe.
Kingfisher recently received the CE mark in Europe and is expected to receive clearance to market from the FDA in March 2008. Those that are interested in Kingfisher Healthcare and how KFH Energy can help them regain their life, can visit www.kfamerica.com.
Dr. Herbert L. Whitaker Jr. is Chief Executive Officer of Kingfisher Americas, U.S. subsidiary of Belgium-based Kingfisher Healthcare. Kingfisher Americas focuses on establishing relationships with patients, patient support groups, and medical experts to improve the quality of life of people with chronic conditions. He can be reached at h.whitaker@kfamericas.com
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A newsletter of two-way communication.
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I need to hear from you, this is a newsletter of two-way communication.
Letters From Polio Survivors and or Caretakers
I would like to hear your story and your history as a polio survivor. If you would like to share your story with your fellow survivors or if you are not a polio survivor we would still like to hear your story. I will set up a database and keep all the stories that I receive. The following two letters were most graciously received this month:
The Seniors Breakfast Special
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We went to breakfast at a restaurant where the "seniors' special" was two eggs, bacon, hash browns and toast for $1.99.
"Sounds good," my wife said. "But I don't want the eggs."
"Then I'll have to charge you two dollars and forty-nine cents because you're ordering a la carte," the waitress warned her.
"You mean I'd have to pay for not taking the eggs?" my wife asked incredulously.
"YES!!" stated the waitress.
"I'll take the special then." my wife said.
"How do you want your eggs?" the waitress asked.
"Raw and in the shell," my wife replied.
She took the two eggs home.
DON'T MESS WITH SENIORS!!! We've been around the block more than once!
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Some of you may recognize this as the Anthem to Warm Springs.
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To the waters down in Georgia where Irwin and Bennett dwell To the dear old Georgia Hall we love so well
Sit the polios assembled with their arm slings raised on high And the music of their wheelchairs casts a spell
Yes) tilt.. music of their wheelchairs the chairs we love so well Now and tomorrow old and new and the rest
We will serenade our doctors while diaphragms shall last Then we'll pass and be forgotten with the rest
We are poor little sheep who sit all day - roll) roll) roll •
We are little black sheep who have found our way - rolluroll) roll,
Gluteus maximus) hurts to thou) damned from here to eternity
God have mercy on such as we - roll) roll)
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ORGANIZATIONS SUPPORTING OUR NEWSLETTER
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We would like to thank those organizations that have provided support to our Newsletter.
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For Help with SSDI, Workman’s Compensation
Lawrence L. Christens
Attorney at Law 540 Powder Springs Street
Building A, Suite 1
Marietta, Georgia 30064-3559
Telephone: 770-422-8111
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ADA CONSULTING SERVICES
LINDA PRIEST
404.636.2049
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Life Quest Coaching
Safe Places……..
Helping you set goals to build safe Places in your world to weather life storms.
www.lifequestcoach.com
877-765-8648
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Publishers Diatribe
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I changed the name of the newsletter. Several years a go Dr. Gawne published this newsletter and informed us that Warm Springs also published a newsletter, at one time, and the name was Polio Chronicles. I have just embellished on that and used the same name that Dr. Gawne used Post-Polio Chronicles.
We are in a new era at Warm Springs, a era which will see much improvement, but the State of Georgia can not make these improvements alone, we need large financial contributions and grants to make modifications to the campus, if we are to establish a world first class facility at Warm Springs, we need to establish communities for polio survivors, conference centers, and any number of improvements to the existing campus, Warm Springs, must and I think will jump into the fore front of treating all people with disabilities and rehabilitating them, so that they may enjoy life as medically possible.
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QUOTE OF THE MONTH
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It is the law of our humanity that man must know good through evil. No great principle ever triumphed but through much evil. No man ever progressed to greatness and goodness but through great mistakes.
Frederick W. Robertson
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YOUR DONATION IS NEEDED
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CONTACT
Harold Roupe (Publisher):
706-444-5276
fdrpps@yahoo.com
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I wish to thank all who have contributed to the publishing of this newsletter. RWSIR Print Shop, for printing, those of you who have contacted me with questions and suggestions have made for a better publication and last but definitely not last those who have made financial donations, for without you we could not afford the paper and printer ink to make this newsletter possible. I continue to ask you to donate to the Mission we propose for this organization, even a dollar will help. With this issue we have more than doubled our circulation to polio clinics, support groups, doctors, suppliers, and any number of people or places that treat or conduct research for polio. MORE THAN EVER Your assistance is urgently needed in order to keep publishing this newsletter; we are currently using THREE box of paper per month. Maybe we should have a ”March of Dollars“.
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If you would like to donate to the FDR PPS Foundation, Inc. please use the form below and mail to the address shown in this newsletter.
(Note: Please select the text below and on your "print" screen choose "print selection" and that should provide you with what you need. Thank you for your contribution to the FDR PPS Foundation, Inc.)
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FDR PPS Foundation, Inc.
231 Cedar Drive
Sparta, Georgia 31087
Name ________________________________
Address ________________________________
City, State ZIP _________________________________________________________________________
E-Mail: ________________________________
Phone Home: _______________________
Spouse’s Name _________________________ Date of Polio ________________
Please fill in all the blanks it is important that we are able to get in touch with you when important information becomes available. Note the amount of your donation below:
$25.00________ $50.00________ 75.00_______ $100.00_______ $150.00_______ Other_______
At the present time we do not have our nonprofit status, we will soon be filing our corporate documents both to the State of Georgia and the U. S. Government.
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We wish to thank Kim Creamer and the staff of the print shop at the Roosevelt Institute for making this newsletter possible.
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Post-Polio Chronicles is a publication of the FDR PPS Foundation, Inc. and reflects the opinions of the authors and not neccessarily the views of the FDR PPS Foundation. This on-line publication has been provided on a volunteer basis from James Davis on behalf of the publisher, Harald Roupe and the FDR Foundation. This on-line Newsletter was duplicated from an electronic copy of the hardcopy published by Mr. Roupe. If you would like a hardcopy to be sent to you please contact Harold. Your participation in this newsletter will benefit us all. I hope the Foundation will soon have it's Nonprofit Status with the State of Georgia and the U.S. Government in the very near future . I'm sure, in the mean time it must be costly to file for the non-profit status along with paying for the current cost of the hardcopy newsletter. Please contribute if you are able.
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