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
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 dedicated to raising funds for research to improve
the quality of life for persons with cerebral palsy (CP).
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
- 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.
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.
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.
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. 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 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
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!
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!
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!
and after the ride, we got so many grateful comments that warm our hearts: About two weeks
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!
"Thank you Pedal-with-Pete.. another Great Day..
to support CP Research."
99 mile route again this year!
Thanks for all your hard work!"
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.”
for an OUTSTANDING JOB!!!
This event is always so close to my heart.
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!
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
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 four 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 course in map reading!
Everybody was able to meet with and greet Pete – and that makes all the greeters and Pete happy.
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.
On Sunday, September 15,
2013 twenty-four riders dusted off their bikes and pedaled for a cure to raise
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
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
Refreshments were served and prizes were awarded after the
completion of the ride at the
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
Thank you, Sponsors of PwP, Emmetsburg, Iowa
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
Columbus, OH – Saturday, August 2, 2014
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 email@example.com 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 process, 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
Research and Education Chair
Thanks for your support as a donor, sponsor, rider, walker, or volunteer! We hope to have your continued support this summer and beyond!