WALK A MILE FOR PETE WEEK

To Be Observed Oct 20-26

 

Friends and supporters of Pedal-with-Pete are being encouraged to take time for a special walk with fall.  Pete… and Sarah Jane and Nathan and Neal and Addy and thousands of others just like them… walk with great difficulty or not at all because they have cerebral palsy.  Most of the rest of us walk without ever giving a thought to how easily we place one foot in front of the other.

 

This fall, Pedal-with-Pete is challenging YOU to WALK a mile for Pete and for all those who dream that someday they will be able to move about without wheelchairs and walkers and braces.  We’re suggesting the week of October 20-26 as a time to take that special walk—but this challenge is not limited to those dates.  Choose anytime or anyplace to WALK a mile for these special folks.

 

We’re asking all walkers to consider how easily they get around, an activity most of us take for granted.  We’re further asking each one who WALKS to consider giving a gift of gratitude—a gift that will be used toward research in movement disorders—a gift that could help make it possible for Addy and Neal and Nathan and Sarah Jane and Pete—and thousands of others—to one day… WALK… without a wheelchair, braces or a walker.  Pedal-with-Pete thanks you for walking on their behalf.

 

                          Sarah Jane                         Nathan                       Neal                          Addy                          Pete

Contributions may be sent to Pedal-with-Pete, PO Box 274, Kent, OH 44240.

 

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WE’VE GOT MAIL!

 

 

Pedal-with-Pete would like to hear from YOU.  Please write—snail mail or e-mail—to one of the addresses below.  We will share your thoughts and ideas in future issues of The Spokesman, published twice yearly, in the spring and fall.

 

 

CHECK OUT OUR WEB SITES:

 Kent site – www.pedalwithpete.com

Columbus site – www.pedalwithpete.org

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FROM THE PRESIDENT

 

 

Greetings on behalf of Pedal-with-Pete!

 

With your help and that of all PWP supporters we have had some good years.  This is an exceptional year!  Long have we yearned for bike-a-thons and similar fund raising events in addition to those we are privileged to hold in Kent. Within the past few years, a grass roots effort took hold in Iowa that has returned some good results, and we have been thankful for that.  This year an extremely effective first effort in Columbus, Ohio, succeeded beyond their dreams and our fondest hopes.  We are encouraged that this is but the unfolding of a process that will expand and expand until there is an event happening throughout every area of our country – and perhaps beyond.  Indeed, if there are among you organizers ready to “get something going” in your locale, let us know and we will do our best to share our experience so that you can become part of this mushrooming effort.

 

It is a matter of some pride with us that so much of what we do happens through the efforts of dedicated volunteers.  It has been said that contributions to churches are our most effective means of getting money to needed sources precisely because of the volunteer nature of those organizations.  Churches are not the only institution for which that is true.  Overhead is an absolute minimum in our operation. That means that when you send a dollar, almost all of that ends up going to basic research.  That is of perhaps more significance to donors and to volunteers in this time of economic uncertainty.

 

We have been given some additional incentive for our accepted mandate by the recent developments in the progress of Christopher Reeve.  If something beyond recognized medical knowledge for treatment of injuries to the spinal chord can happen, perhaps there is more that can be done within the even less well understood brain.

 

At this writing the parent organization in Kent is undertaking a “WALK a Mile for Pete” effort. You can read about that in this issue.

 

Please tell us of other efforts so that they too can be reported here.

 

Thank you once again.

 

George Gaiser

President, Pedal-with-Pete

 

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PETE’S PHILADELPHIA STORY

Peter O. Zeidner, Founder, Pedal-with-Pete

Once again I was fortunate and honored to be invited to attend this years Circle of Care Conference held in Philadelphia. The three event started out with a two hour tour of Philadelphia’s Children’s Hospital where they are pioneering in intra-utero surgical procedures that, as they have found, leave no visible scaring. Research is being conducted on this with the hope that surgeons can use these scar-free techniques during other surgeries and leave minimal scarring and disfigurement.

On the second day we gathered at the newly built Kimmel Center which houses the Philadelphia Symphony. This is quite a remarkable building to see as it was designed to resemble a cello. This conference hosted many impressive speakers. Two of them being Dr. C. Everett Coop, M.D. and Janice E. Brunstorm M.D.

Dr. Brunstorm is a physician that founded the Cerebral Palsy Center at St. Louis Children's Hospital. What is special about Dr. Brunstorm is that she, herself, has cerebral palsy. Dr Brunstorm told us that she encourages all of her CP patients to dream big and not let the disabilities get in their way. What better example could she give her patients than her own story. So many in society think negatively about the disabled and do not encourage living life to the fullest. Dr. Brunstorm is the exact opposite. After her speech I felt uplifted and very encouraged. She is also the co-founder of the center of Martial Arts for people with CP; this is the first and only center of this kind in the world.

At the luncheon the Key Note Speaker was Dr. C. Everett Coop, M.D., the former Surgeon General of the United States and also the founder of the first Children's Hospital in the world housed right in Philly. At the young age of 89, Dr. Coop still has an extremely powerful voice. He spoke to us about the many problems facing modern medicine today. As a brief example, he told of a procedure that involved connecting the thorax to the esophagus that he performed when he was a physician. He said it was like "connecting two pieces of cooked spaghetti together at the bottom of an ice cream cone." He admitted that with time and after many procedures his success rate was 88%. He also let us know that he was performing over 400 of these procedures each year. He told us that now when he tours a children’s hospital the very first thing he inquires about is how many of these procedures they have performed this year. Unfortunately, and not because of new technology the average he said now is about 2 to 4 a year. Mr. Coop believes the reason for this was not because the disorder occurs less but because the skill it requires is just not there. He strongly believes that the physicians are there, but they are lacking the skill because they are not practicing it enough to perfect it.

The three-day event was capped off by a black tie gala held at the top of the steps of the Philadelphia Art Museum. These are the steps made famous by Sylvester Stallone in the movie Rocky. Cheryl Crow was the featured performer along with fireworks to end the ceremony.  I, once again, had a fabulous time at the Circle of Care Conference and I left this year’s event looking forward to next year, which is scheduled to be held in Vancouver.

 

 

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ABOUT DR. ALBRIGHT’S WORK…

 

The annual Pedal-with-Pete grant to cerebral palsy research will be presented in December to Dr. Leland Albright at the Children’s Hospital of Pittsburgh.  This grant will make our total contributions to Dr. Albright’s work well above $100,000.  Pete recently presented several questions to Dr. Albright regarding his work.  Below are two of Pete’s questions along with Dr. Albright’s responses:

 What is the status of the National CP Center [in Pittsburgh]?

 

The National Center for Cerebral Palsy (NCCP) is a dream of mine and would consist mostly of a group of people committed to providing state of the art care and cutting edge research in CP, rather than a structure per se.  The funding or the first 5 years would go mostly to salaries of people recruited to the center. I think it would be ok for the center to be included in the capital campaign, but also think it could come from one major donor.  Unfortunately, no rich people have a major commitment to CP.  The NCCP would serve mainly children but would have some involvement with adults as well.

 How have you used past gifts from Pedal-With-Pete?

 

Past donations have been used to support our work evaluating the use of intrathecal baclofen for dystonia [neurological movement disorders which cause involuntary muscle contractions], to purchase a myotonometer (used to measure muscle tightness in movement disorders), to purchase a computer with superb video capabilities that I used in lecturing around the country and abroad about CP and the movement disorders, and to support our research with deep brain stimulation for dystonia (helping pay the costs of the psychological testing done before and during the stimulation).

For more information about Dr. Leland Albright, cerebral palsy, The Spasticity Clinic or medical research, see the Children’s Hospital Pittsburgh web site at www.chp.edu.

 

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KENT BIKE & HIKE EVENT ANOTHER SUCCESS

 

Gray skies and happy faces.  What a combination for the eighth annual Kent Bike & Hike event held at Fred Fuller Park on May 18!  About 150 walkers and riders participated in this “main event” to support cerebral palsy research.   A cold drizzle, a bit of sleet and even a detour along the river walk route due to heavy rains earlier in the week did not dampen the spirits on that spring morning.

 

Many thanks to all who took part.  A record $26,000 was raised in sponsorships, registrations, the bike raffle, and pledges!  Among the winners for most dollars collected for research were the Tetonis Family of Leroy, Ohio, who brought in nearly $1200, the Graham Family of Russells Point with $930, and W. Wayne White of Akron $834.  The Seberas of Belpre were close runners- up.  C. J. Barnette of Akron won the GIANT bike.  

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

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PEDAL-WITH-PETE GOES CENTRAL!

 

Central Ohio, that is!  August 17 was the date for the first-ever “Ride, for Pete’s Sake!”  Starting from Hilliard, Ohio (a suburb of Columbus), 165 cyclists chose from carefully planned routes of 7, 17, 46 and 78 miles.  The donated food was great, the routes were well-marked, sag support was terrific and the riders were enthusiastic.  Pete was on hand for the festivities, and even a couple of showers couldn’t dampen spirits.  Most importantly, thanks to all of the riders and sponsors, $14,000 in proceeds will be contributed to the PWP cause!

 Two happy winners took home bicycles!  Manuel Moreno won the raffle prize, a Road Warrior bike generously donated by Cannondale, while the choice of a Specialized Hotrock or a Giant MB Boulder, courtesy of BikeSource, went to Debi Carabin for bringing in the largest dollar amount in rider pledges.  The door prizes were also popular, giving lots of riders a pleasant surprise upon journey’s end.

 
Although most of the Central Ohio volunteers were new to Pedal-with-Pete rides, collectively they brought a wealth of bike touring experience to the project.  But in spite of all that know-how, even the volunteers were amazed when the inaugural ride came off without a hitch.  Feedback from the riders has been very positive.  Everyone is savoring the satisfaction of a job well done, but all eyes are now turning to next year’s ride on August 16, 2003.  Come join us!