CONTENTS

1.  Mission

2.  ASSISTANCE

3.  A Message From The Director &

     Publishers Comments

4.  Research

5.  Questions

6.  Letters

7.  Support

8.  Publishers Diatribe

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.

SUGGESTED REFERENCE MATERIAL

1. Postpolio  Syndrome by Julie K. Silver, MD and Anne C. Gawne, MD

2. www.survivorsofpolio.com

3. The Polio Paradox by Richard L. Bruno, H.D., Ph.D.

4. 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

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.

ASSISTANCE

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:

1. Sign the Petition to restore the ADA at: http://www.democracyinaction.org/dia/organizationsORG/adawatch/petition.jsp?petition_KEY=589&t=roadtofreedom.dwt
2. Urge Congress to pass the ADA Restoration Act at: http://www.democracyinaction.org/dia/organizationsORG/adawatch/campaign.jsp?campaign_KEY=6722&t=roadtofreedom.dwt
3. View photos and descriptions of the Road To Freedom bus tour events across America at: http://adawatch.smugmug.com/gallery/2925333 
4. 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

A MESSAGE FROM THE DIRECTOR

(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.

COMMENTS

(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.

RESEARCH

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

A newsletter of two-way communication.

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

          ************************************

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!

_______________________________

Some of you may recognize this as the Anthem to Warm Springs.

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)

Publishers Diatribe

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.

QUOTE OF THE MONTH

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