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The Spokesman
Spring 2014

PWP bk white 3

In this issue...

2014 Presidents Message | 2013 Grant Selections | 2013 Ride Reports (3) | Thanks to all our 2013 Corporate Sponsors (of 3 Events) | Looking ahead to 2014 | Donors: Multiple Ways to Contribute | Thanks from the Board of Directors


2014 President's Message

We Fine-Tune the CP Research Grant Selection Process As The Quality of Grant Opportunities EXPAND

by Ernie Larger, Board President


Pedal-with-Pete (or “PwP”) is a philanthropic organization Erniededicated to raising funds for research to improve the quality of life for persons with cerebral palsy (CP).    


This is achieved through education and awareness, and through raising and managing monies to fund the most promising CP research.

 

In this newsletter article, I’d like to update you about what the Pedal-with-Pete Foundation is doing to ensure that your donations are being leveraged to the fullest. 

 

PwP is now recognized nationally, to a point where we receive many more requests for CP research grants than we can fund.    Therefore, we continue to make improvements in our process for identifying the most promising research projects.  The most recent examples of this include:    

   

  • adding Colin Edwards, Ph.D., to our Research & Education Committee to assist in assessing all research grant requests.   Colin has training and experience in public health, research, and medicine.
  • partnering with the American Academy of Cerebral Palsy and Development Medicine (AACPDM) to aid in the assessment, ranking, and selection of grant requests.   The AACPDM is the premier international organization promoting excellence in research and services for the benefit of people with CP and childhood-onset disabilities.  Their grant board is made up of medical and research experts, and has a strict and unbiased grading system to evaluate grant proposals and to mentor researchers/investigators.   

 

In the early years, much of our funding went to Leland Albright, MD, a pioneer in CP research who founded the Spasticity and Movement Disorders Center at the Children’s Hospital of Pittsburgh in 1986.     He was the first investigator in the United States to be approved by the Federal Drug Administration to study the use of intrathecal baclofen to relax certain muscles in the body.  He was also the first to perform deep brain stimulation for tremor dystonia resulting from cerebral palsy.   Pete Zeidner, our Founder, was a patient of Dr. Albright and benefited from his work.

 

More recently, PwP has funded research involving some of the most prestigious research institutions such as MIT, Harvard Medical School; and leading pediatric research institutes such as Nationwide Children’s Hospital (NCH).    We have received very positive feedback on the improved care that CP patients have received at NCH because of the “Learn from Every Patient” project funded by PwP.Kent.Lion's Club Volunteers.2014.6

 

PwP’s Board of Directors is committed to increasing funding and making certain that every dollar in donations is wisely used.  This includes not only investing in the best research as mentioned above but also involves minimizing expenses.  PwP has no paid staff or contractors, so almost $.90 of every $1.00 that you donate goes directly to funding CP research.  

 Columbus.Kiwanis and Core Volunteers.2014

We are indebted to all of you—our donors, sponsors, volunteers, and participants—for the success that has been achieved in fundraising to support CP research.   


2013 Grant Selections

Research Grants You Helped Fund Could Improve Lives of MANY People with Cerebral Palsy!

by Mimi Singh, Chair of the Board's Research and Education Committee


The Pedal-with-Pete Foundation received a number of research grant requests for funding in late 2013.  The Research and Education Committee members recommended and the PwP Board of Directors approved funding for the following two research projects starting in 2014:

  • The evaluation of outcomes of hip interventions for children with CP. Who We Work For.2014  This is a large international multi-center study with participating researchers from several countries.  The lead investigator is with The Hospital for Sick Children in Toronto, Canada.
The research compares outcomes for patients with CP based on when and if they receive surgery for hip dislocation.  Such surgery is very common for people with CP, and the timing of treatment is problematic because of the developmental issues.  Research that helps guide doctors with evidence-based data on how to time these surgeries will be such a help.
  • A study involving the use of cryoablation of the salivary glands to control drooling.   There is a new area of research and the lead researcher has significant research experience.  The study will be conducted at the Case (Western) Medical Center and Rainbow Babies, and Children’s Hospital in Cleveland Ohio. 
The research tests a technique that could lead to a treatment that would resolve the drooling that so many people with CP suffer from.  Current temporary treatments produce dry-mouth side effects which can lead to dental problems and discomfort.  New treatments desperately are needed.

Both of the research studies being funded are targeting conditions impacting a large segment of the population with Cerebral Palsy.


Look-up PwP's complete granting history on the Grants portion of our website.


2013 Ride Reports

2013 Pedal-with-Pete, Columbus, Ohio


You Warmed Our Hearts!

by Cathy Levy, Event Chair


Our 2013 ride on Saturday, August 3 warmed our hearts in some very special ways! 

 

After many years of sunny ride-days, we got our first year with a DISMAL forecast for the entire week preceding the ride, and a frightening radar screen showing a huge rain storm at 5:30 AM the day of the ride. 

 

And still… our loyal riders continued to pre-register for Pedal-with-Pete, Columbus throughout the pre-registration period and put their non-refundable dollars toward cerebral palsy research.  

 

And still… even more came to register on Saturday and join the pre-registered riders on Saturday and watch for a break in the weather or ride between the rain drops!

 

And maybe thanks to your generosity… the clouds parted… and the storm clouds altered their course, and we had a glorious day of riding from about 9:00 AM through the rest of the day!  


Warm-the-heart moments:

 

On the day before the ride, in response to our email to registered riders announcing that the ride was ON, Rain or Shine, we got this encouraging response from a rider who planned to drive 90 minutes the next morning to get to the ride’s start:

“I am praying for a good day tomorrow too.  I pre-registered and may still drive down tomorrow morning from Toledo because this is one of my all-time favorite rides and for the best of causes.  You guys work really hard to help CP children & adults.  I have made six in a row so far and do not want to break the string. We have our local bike tour tomorrow and skies are forecasted clear in Toledo, but I want to be in Columbus.  God will Bless Pedal with Pete somehow.  I think I can ride at least 50 in the rain.”  

After a full year of planning, purchasing, phoning, pleading, and pedaling for the ride, this is the kind of email that warmed the hearts of many anxious volunteers!


Kids on Bikes.2

On the afternoon of the ride, in partnership with TAASC (The Adaptive Adventure Sports Coalition) and thanks to some targeted donations solicited by the PwP Board, we were able to present four specially adapted bikes to children and youth who have cerebral palsy.  The smiles of those kids with their “wheels” would warm anyone’s heart!


During and after the ride, we got so many grateful comments that warm our hearts:
"Thank you Pedal-with-Pete.. another Great Day..
to support CP Research."

"Awesome 99 mile route again this year!
Thanks for all your hard work!"

“Volunteers everywhere! No matter what you needed,
you never had to wait!”

“Just a note to say thank you and all for a great day on the bike.
This was our first time to ride in PWP. We had a fabulous time.
The course was well marked, good roads,great rest areas
 and all your volunteers could not have been any more cordial.

We talked about the party atmosphere after the ride and agreed that you guys know how to entertain.”
“Thanks again for an OUTSTANDING JOB!!!
This event is always so close to my heart.
About two wePost PWP 1eks after the ride, the volunteers held two T-shirt and Water bottle distribution events.  We had more leftover materials than usual since so many pre-registered riders didn’t show up to the ride and get their “stuff” due to the weather forecast. Our hearts were warmed as we raised another $700 for CP research, and we are now down to the usual “extras” we like to see. The riders loved the graphics for this year’s ride, and we wanted to be sure that our promotional materials got out to our loyal friends who would talk up the cause and the ride!

Thumbs UpWith 717 riders compared to 900 last year, we feared that our funds raised from registrations were going to be a lot lower than last year. But, our hearts were warmed when we calculated that we raised almost the same amount of money from the riders!  Thanks to so many of YOU, we raised tens of thousands of dollars for CP research!

Riders, mark your calendar for this year’s ride on Saturday, August 2, 2014. Pre-register online for $35 ($10 for kids 16 and under), or register on the day-of-event for $45. We offer cycling routes for people of any age or ability (a 7-mile bike path-only route, and 6 other routes ranging up to 99 miles). 

For 2014, we added a 2.5 mile WALK on paved driveways and pathways, starting from the same location!

Every year, over 50% of the riders are NEW to Pedal-with-Pete! That’s a good thing! But it also means that we need to keep spreading the word, every year.  It's up to you and me to  pay-forward and build up the next generation of riders, walkers, and philanthropists.  So, invite your contacts, and help us keep the event fresh and successful!  Encourage your friends and loved ones who ride or walk to support CP research and
Pre-register online or by mail right now, or donate directly to cerebral palsy research!


2013 Pedal-with-Pete, Kent, Ohio


It was LOVELY, and the next Ride is only 2 Weeks Away!

by Guy Russ, Event Co-Chair 


On a lovely June 1, 2013, the 19th annual P-w-P ride and walk was held ‘where it all began’, in Kent, Ohio.


Our starting point was Faith Lutheran Church, as has been the case for the past couple of years. It was made a little more exciting and exacting in 2013 because the funeral and gathering for one of the older members of the congregation was held that same morning at 10 am. Needless to say, the parking lot was full.  Most of the riders were able to exit the parking lot before the funeral began.  Volunteers helped park not only the cars of the participants, (we were able to use the KSU parking lot across the street), but also those of the folks who attended the funeral. Fortunately the weather, coupled with the fact that we had set up tents in anticipation, enabled us to do most of the organizing outdoors!


Registration began at 7 am for all Movitated to Ride for Mylesfour of our cycling routes (they vary in length so that all who desire can ride) plus the walking route around Kent State University grounds.


There were 105 of those riders/walkers aided by 25 willing and able volunteers; about half the volunteers were from the Kent Lions Club. 


Many favorable comments were made about our routes and the general organization, which was good to hear because the rainstorm the previous day had washed the chalk marks off the pavement for the on-campus ride. Those folks had no alternative other than a quick courPeter Zeidner with Kent Participantsse in map reading!


Everybody was able to meet with and greet Pete – and that makes all the greeters and Pete happy.


The day began cool, but warmed up rapidly. By the time the wind began in the afternoon, almost everyone had completed their chosen courses.


All in all, it was a very good day for P-w-P, thanks to plans, volunteers and riders.


As you read this and are able, join us at the same address, 931 E. Main St. Kent, for our 20th anniversary bash on June 7.  Online pre-registration is available, and you can also register on Saturday, June 7.


2013, Pedal-with-Pete, Emmetsburg, Iowa


Dedicated 4-H Group Raises More Than Ever 4-CP!

by Julie Naig, Event Chair


For the past fifteen years the Palo Alto County 4-H County Council has been sponsoring a bike ride to raise money for the Pedal with Pete Foundation.


OnEmmetsburg.2800.2014 Sunday, September 15, 2013 twenty-four riders dusted off their bikes and pedaled for a cure to raise over $1500.00. 


Riders ranged in age from 8 to 53.  Registration was from 1:30-2:00 p.m. at the Exhibits Building on the Palo Alto County Fairgrounds in Emmetsburg, IA.  The ride began and ended at the fairgrounds. 


Participants rode on a designated route and were able to ride as many of the miles as they wanted.  Those who rode the whole route pedaled for approximately 11 miles.  A support vehicle followed the riders. 


Refreshments were served and prizes  were awarded after the completion of the ride at the fairgrounds.

The 2014 ride will be on Sunday, September 21, and for more information, contact me, Julie Naig.


Thanks to all our 2013 Corporate Sponsors


Thank you, Sponsors of PwP, Columbus, Ohio


Thank you, Sponsors of PwP, Kent, Ohio


Millennium Sponsor

Thrivent Financial - Jeff Ritter and Dave Ritter


Titanium Sponsor

Steinert Industries


Golden Spoke Sponsors

Ray’s Place

Ron Marhofer Chevrolet, Inc.

Kent Lion's Club


Silver Chain Sponsors

CIGNA Foundation

Hometown Bank

Precision Prune and Landscape
Tires and More



Thank you, Sponsors of PwP, Emmetsburg, Iowa


Dairy Queen

Fareway

Food Pride

Hardware Hank

Casey’s General Stores

Graettinger Country Store

J.T. Body Shop

West Bend Journal

Five Star Tool & Supply


Looking Ahead to Pedal-with-Pete in 2014

Mark your calendars for this year’s event dates:

 

Kent, OH – Saturday, June 3, 2014

Pre-Register Now!


Columbus, OH – Saturday, August 2, 2014

Pre-Register Now!


Emmetsburg, IA – Sunday, September 21, 2014

Contact the Organizer!

 

It’s not too late to plan and create a

new ride in a new city for 2014!  

Contact the board at pwp@pedalwithpete.org if you think you might be interested in doing so.

 

Thanks again for your support in 2013.  

We’ll see you in 2014!


Donors: Multiple Ways to Contribute

Continuing to Expand Options

by John Manley, Treasurer, Pedal-with-Pete

Good News! Pedal-with-Pete can now accept stocks, bonds, cash and other securities as gifts through our Charles Schwab account.

If you would like to make a donation through this p
Thanks for the Smilesrocess, please contact one of the two Board officers noted at the Donate Tab of our website www.pedal-with-pete.org , and they will forward a Charitable Gift Transfer form to you that will facilitate your donation.

That same web page has a link for donating online with a credit card, and also provides our P.O. Box where you can send your donation through a check.

Thank you for giving help and hope to so many people who are impacted by the condition of cerebral palsy.


Pedal-with-Pete Foundation - Board of Directors

Pete ZeidnerPeter Zeidner Pleased
Founder

Ernie Larger
President

Cathy Levy
Vice President

Lauri Kaplan
Secretary

John Manley
Treasurer

Chris Brooks
Publicity Chair
walk-or-ride 2
Saundra Cooke
Campaign Chair

Mimi Singh
Research and Education Chair

Paul Stockpwplogo.color 2
Finance Chair

George Gaiser
Board Member

Don Wisler

Board Member


Thanks for your support as a donor, sponsor, rider, walker, or volunteer! We hope to have your continued support this summer and beyond!

Thanks for Supporting CP Research
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