Raising
Money
for
Autism
"It's time to get moving"
By
Lori Kuhre
Gary Kuhre
Lance Winslow
Margit Barreras
© 2008 Online
Think Tank Virtual Press
Please Note:
Table of Contents
Dedication 4
Acknowledgements 5
Introduction 8
Foreword 9
Chapter I – A Little on Autism
12
The Challenges Ahead 15
The Need for Research
16
Educational Special Needs
18
Raising Funds for Growing
21
Chapter II – A Walk Across America
22
The Story of Gary Kuhre
24
Uniting the Community
25
Bringing Awareness to the Region
26
Raising Much Needed Funds
27
Chapter III - Bicycling for Autism
28
Peddling for Autism – Bike-a-Thons
28
Long Distance Bicycle Fundraisers
31
Choosing Routes 34
Watching the Weather 35
Conserving Your Cash 36
Choosing Equipment 38
Nutrition Component Critical
44
Chapter IV - Planning the Fundraiser
46
Calendar Considerations
48
Coalescing the Committee 49
Safety for Participants
50
Locating Pledge Drive Teams
51
Pledge Donation Strategies
52
Chapter V – Publicity for Awareness
55
Radio 56
Cable Television 57
Newspaper 58
Newsletters 59
Online Social Networks
59
Email Campaigns 60
Syndicated Internet Articles
60
Flyer Campaign 61
Fax Marketing 61
Chapter VI – Business Community and Politics
63
Small Business Owners are Gold
63
Approaching Corporations for Donations
64
Attaining the Blessing of City Leaders
65
Resources & References
66-68
Appendix I –
Forms in Portrait Orientation (Separate Work
Book)
Appendix II –
Forms in Landscape Orientation (Separate Work
book)
Dedication
To all effected by Autism…………
I know your heartaches and your gut
wrenching sobs for the child you feel could have been, the questions of “what
if” and “why my child” can take you far away and make you bitter. Try to not let
those thoughts in your soul they are a trick to make us feel cheated of “what
should have been.”
Leave that place because through that child you can find real life, each attempt
at a smile they make be it only once can touch your heart deeper than anything, the “small”
accomplishments are extraordinary, you will find yourself crying out in joy at
one accomplishment that you may have never noticed was made had they not been
Autistic, you will take each bird singing for the opera it is, each breeze on
your check as the breath of God, and when they do fall asleep you will look at
their innocent face with their angel kissed eyes and feel a love you would have
never known you were capable of had things been “the way they should have been”
Your gift is before you, open it and run with it what an honor that we were
chosen to raise the Autistic Angels of God. This life is not about what we want
it is about what we do with what we are given……… To my Joshua this is how I feel
about you I thank God for all of my children daily, this is to all of you.
Acknowledgements
By Lori Kuhre
We at
Stride
4 Autism want to acknowledge those who have given us so much
moral and momentary support. To each and every one of you we are so touched that
you were willing to open your hearts and minds to our cause, to actually listen
to what we had to say you took time from your busy schedules to aid us in our
quest. When we started we did not know how to ask "for help" from others about a
disorder that is still a question mark and misunderstood.
You opened your finances
and your ears at the same time, you wished us well, prayed for us, and gave us
useful advice. We only showed you a picture of our son Joshua and told you our
story, our dream of what we wanted not only for our son but all those affected
by The Autism Spectrum Disorder, we wanted and still do to give them a chance
and we are so blessed that all of you gave us a shot.
We would not be here 1 year
later planning another fundraiser still going, the compassion to our
organization that was shown not only from friends and family... those you would
hope would be there... but from strangers whom we did not know, the parents or
someone touched by a child diagnosed with autism and other disorders we were
strangers to you physically but not emotionally through you and your
encouragement we knew we were not alone it was wonderful.
The small business owners
in our town were so amazing in their support, my jaw is still hanging open not
only were you all some of our biggest supporters, the way you care about what is
going on in your community gives me hope. The big business supporters we know
how many organizations come to you and ask for help daily, but you chose our
"brand new" organization and helped us, we are so grateful that you took the
time from the world of business to stop and smell the fresh air and gave us your
support.
The news stations and
newspapers we would not have been able to succeed without all of you, you gave
us the opportunity to come right into people's homes in their personal space and
they listened to us on TV or read our stories in the newspapers we had an
opportunity through you that was a pure gift!
Our family, friends and
church sisters and brothers you are our heart and souls you listened to our
ideas that seemed impossible, you keep us in your prayers, you have stood up to
the tasks we asked of you, and we are still wondering how we can ever thank you
enough. The state city and state officials that opened your minds to our ideas
and encouraged us to do them, having your encouragement meant our dreams could
be reality and we knew we could do this.
To God we thank you for our
salvation through your son, your protective hand has stayed over our family and
organization we do feel it, and we know "through you all things are possible!"
To Lance no words can express to you how touched we are by your kindness, you
took Autism on without a blink of an eye and are helping a family you did not
even know do amazing things, you are an inspiration for what you do for charity
and with a heart like yours I know many will continue to be touched and
motivated by you, you are a real
"pay it forward type of person" to us you
are an angel............Thank you.
Through all of you, we not
only come from;
The Biggest Little City in the World we believe
we can become
The Biggest Little Organization in the World!!!
So with that said, let me attempt to remember all the
names of the people, organizations and companies that have helped us so far, we
would like to thank the following companies and organizations in no particular
order;
ACON – Autism Coalition of Nevada, Aqua Tech, Beyond
Juice, Starbucks, 4 Paws, Wild Oats Food Store, Camp Lots of Fun, Renown Rehab
Hospital, Macaroni Grill, Bully's Sports Bar, Dayton Valley Golf & Country Club,
Denny's, Round Table Pizza, Empire Ranch Golf Club,
Saturn of Reno, Wolf Run Golf Club, Ben's Fine Wine and Spirits, Wild
Island Adventure Park, Buffalo Creek Ranch, US Bank, Albertsons, RAIN – Reno
Autism Network, The Sign Shoppe, Grand Sierra Resort, FEAT – Families for
Effective Autism Treatment, The Continuum, Sierra Speech and Language Group, Bob
Beg Design, Nevada Wolf Pack, New Balance, Total Image Printing, First Baptist
Church of Sparks, Wamsutter Community Church, Great Basin Credit Union, Sports
West Athletic Club, Austin's Mountain & Country Food & Spirit, Ahhh! Massage,
Wild Bird Unlimited, Birkenstock, Fast Signs, Blue Moon, Moana Nursery, Reno
Cycling & Fitness, KRNV, KREN, KTVN, Reno Gazette Journal, Sparks Tribune, fox'
Den Pizza.
And let me personally thank the wonderful people who
have been a god's send for our efforts, again in no particular order;
Diane Groth, Kim Mays, Louis Mays, Earleen Russell,
David & Susan Semas, Paul and Kristi Heinman, Linda & Allan, Mr. & Mrs. Reed,
Tom & Florence Byrnes, Monte Russell, Ted Ripley, Mike & Helen Pate, John
Rassmussen, Daniel Morrison, Misty Hailey, Mr. & Mrs. Fauria, Ralph Toddre,
Darryl & Debbie Handke, Mr. & Mrs. Buckley, Earl & Billi Pat, Richard Hand,
Kevin Smith, Pam & Angelo Anastassatos, Eddie & Deborah Duffer, Earl and Connie
Morley, Trey & Leila & Kelly & Taj, Rita & Gordon Paul, Scott Cahill, Helene
Franklin, Greg Overby, Leon & Mercedes Kuhre, Dr. & Mrs. Larsen, Keith Smith,
Terry Doelman, Melinda Mechum, Bob & Liz & Derek & Amy Tanahill, Rick & Chris &
Cindy & Becky Silver, Shawn & Dawn Fuller, Eddie & Deb Duffer, Donna Bateman,
Kendra Henry, Marquis & Kayla, Terry Happle, Missy Davidson, Taya, Amanda, Toni
Richards, Kateland, Ken & Bonnie Porter, Jim & Nancy Close, Michelle Hesser,
Bonnie Rudolph, Michelle Hesser.
Lastly, let me thank our government agencies that have
worked with
Stride 4 Autism:
The US Department of Education, City of
Reno Fire Department, Mayor Bob Cashell, Mayor Gino Martin, Senator Harry Reid,
Senator John McCain.
All
our love to each and every one of you,
Lori
Kuhre
Introduction
By Lance Winslow
When Lori Kuhre first
emailed me to discuss doing a car wash fundraiser for Autism in Reno and I could
not have imagined a more worthy cause. As we began talking, I indicated my
long-distance cycling endeavors and she noted her husband's heroic Stride for
Autism walk. I thought, wow, now those are my kind of folks, what wonderful
people. This is how Gary, Lori and Joshua,
became the inspiration for this eBook project.
We give this
information to the cause of Autism, to you, wherever you are in the World. We
wish you well in your fundraising endeavors and hope this eBook gives you a
significant head start. Raising awareness and money for Autism is not easy, but
it's something that the Autism Community must do, we must work together in this
common cause.
Now then, we have put
this book together in basically 4-Sections. The first chapter is an introduction
to the Spectrum of Autism Disorders. Chapter II discusses the inspiration of the
Stride-4-Autism Foundation and Gary Kuhre's walk across America to raise
awareness for Autism and health care insurance reform with regards to Autism.
Significant strides have been made thanks to the inspirational leadership of
Gary and Lori Kuhre in Northern Nevada. These first two short chapters give you
some understanding into the importance of uniting a community and raising
awareness as part of your fundraising endeavors.
The remaining chapters
explain How to
Run a Successful Bike-a-Thon Fundraiser, and although it is geared
specifically towards raising funds for Autism, this book can be used by any
non-profit group of nearly any size. The final section of this eBook is the two
Appendix Sections, with loads of sample forms, brochures and just about
everything you need to get started planning your Bike-a-Thon Fundraiser right
away. This eBook is free to the world and the authors give it away for the
purpose of helping non-profit groups raise money and to raise awareness for
Autism. You may re-print this book and even put it on your Autism Website to
give away, we sincerely hope this work serves you well and we enjoyed the
process in making it for YOU!
Foreword
By Gary Kuhre
I am
a father of 6 children one of which has Autism and I plan to do whatever I can
to help him and others like him! So, on June 9th 2007, I am beginning my walk
alone from Sparks, Nevada to Washington DC APPROXIMATELY 2,800 MILES to raise
awareness of Autism and point out the injustices being perpetuated on our
defenseless disabled children. I want new National legislation written that will
require insurance companies to cover care and treatment of Autistic children up
to the age of 18. These children deserve our empathy, our love, and most
of all they deserve their chance to reach for the brass ring. The CDC announced
that 1 in 150 children has Autism and most insurance companies will not cover
any medical care for them.
The
challenges the parents of an AUTISTIC child face is a daily struggle. Not to
mention the cost of Therapy after a diagnosis is given. There is very little
Therapy available in Nevada for the Autistic child. Of what is available the
Medical Insurance Companies will not cover it, any of it. Once a diagnosis is
given to your child the insurance companies send a letter to their policy
holders telling them to “read their policy exclusions” which excludes Autism,
Down Syndrome, and Mental Retardation from receiving any type of treatment or
therapy. I hope to change that!!
My
wife and I are hoping that aside from the insurance changes, we want to get a
charter school specifically for children with autism here to provide the
therapies and education needed in the Reno/Sparks area. And eventually to open
schools throughout the country. So that our children may receive the proper
education promised them. Plus with all the donations and sponsorships we will be
setting up a scholarship fund for those children with autism whose families have
no means to pay for any type of therapy. It will be called
“Joshua’s fund for autistic children.”
Once
we found out Joshua was autistic I quit my job while my wife works to support a
family of 6 (2 of our children have moved out already) and I stay at home with
him and his brother Jacob (2 yrs old) to ensure they are well taken care of. It
has been a struggle financially, but it is the BEST decision we have ever made.
I
found out that the state of Wisconsin has a very active Autistic insurance
reform and requires that the Katie Beckett (Medicaid program for children with
autism) must pay for ABA (Applied Behavior Analysis) therapy for autistic
children. There are other methods of behavior therapies also (AIT auditory
intervention therapy, Floor time, TEEACH, and Tomatis all of which have done
well for these children) It should be our choice of what therapy we want for our
children.
ABA has been proven time and time again to help more autistic children cope and
relate better than any medications, not that these do not help because they can
but should be monitored closely. It is safer with good results for many to try
and do a GF/CF diet and natural vitamins and probiotics to help heal these
children from the inside out. ABA should be required to be paid for by insurance
companies or Medicaid nationwide (maybe they could share the cost). ABA therapy
costs approx $25,000 to $75,000 per yr for each child (depending on the area you
live). So you see why the insurance companies do not want to pay, but typically
the ABA therapy is only for 2 years and early intervention is the key!!
Some
adults who have autism, do not share the same views with ABA, therapies, or
diets etc...and others do support them, we are not here to argue what does or
does not work we believe each and every person is different and that each should
have their own right to get therapies etc...whether one chooses to or not it
should still be open not just a door slammed in their face.
Our
story began over five years ago when Joshua was born. My wife had a feeling
right away that something was wrong. He did not progress "normally" he would not
talk he screamed and cried all day long. By the time he was 3 he still was not
talking and had been diagnosed as ADHD and developmentally delayed. We began
Speech and Occupational therapy for him that our insurance paid for 2 times per
week for 7 weeks.
In
January of 2006 he was re-diagnosed formally by a professional as Autistic. In
March when the insurance company found out the “new diagnosis” they sent us a
letter saying they would no longer cover Speech or Occupational therapies for
him or anything else to do with his autism, and sent us a bill for all the
speech and occupational therapy he had received since Jan of 2006. The bill was
over $10,000 Thank God we were able to get Katie Beckett Medicaid for him.
This
startled me in to action, and what I found out is that about 93% of insurance
companies do not cover things like, Autism, Down Syndrome, and Mental
Retardation. I think it is deplorable that an insurance company will pay to send
someone to rehab that is CHOOSING to abuse drugs, but will not pay for speech
therapy for my autistic child that did not CHOOSE to be this way.
So
in short this is some of the fire that is driving me to do what I am doing
(walking to DC to start an awareness for the need to reform our health care
system. It is a sad day when you realize our children with disabilities are
being discriminated against. We want to help by starting our own non-profit
organization Stride 4 Autism for autistic children, setting up a scholarship
funds through the organization and eventually opening a charter school.
Autism effects one in every 150 children born in the
United States, it is a very serious issues and one which must be dealt with. It
is costing millions of dollars in each school system every single year and those
costs are increasing. As school budgets are reduced so too is the money to help
educate these autistic kids and health insurance is not covering these costs.
Chapter I
A Little on Autism
What causes Autism? Well, it turns out that is 6.4
Billion Dollar question, the reality is that we don't quite know for sure. Yes,
there are plenty of suspected culprits, such as the Mercury in vaccines, which
you have probably heard about. Then there are questions of frequency pollution
from such things like radars, cell phone towers and even pre-natal ultrasound
use. Scientists suspect there is also a genetic component as well or at least
issues with susceptibility from environmental affects, which also makes sense.
Then there may be some correlation between the introduction of anti-depression
drugs and the increases in the rates of Autism. Each of these suspected causes
have scientific research papers backing their claims, along with other
scientific research papers denying these causes.
And as if all that was not enough there are studies
that show that diet has a lot to do with the severity of Autism and behavioral
issues associated. Margit Barreras explains;
Food and diet play a large role in managing the effects of brain
toxicity that research shows exacerbates spectrum tendencies. More funding and
support are desperately needed in this area.
With more mainstream knowledge available dietary intervention can play a
more poignant part in the managing of such brain disorders; the quicker the
intervention the less damage due to toxicity.
Some scientists have proposed a theory that Autism is
the human brain going through an evolutionary process. In fact there are so many
theories to its cause, that it becomes pretty confusing for parents. There is
currently no known cure for Autism although someday there most likely will be,
today, there are only treatments, which make Autism livable for families
involved and the individuals who have it.
Still, the topic of cure and intervention success is highly controversial at
this point notes Margit Barreras.
The exciting part is people are openly talking about it and considering the
research. More research needs to be
done in order to come to a better understanding about how we might address this
issue as a community.
What is Autism?
This too turns out to be a difficult question to answer, but finally the
professionals have come together and decided that Autism is a spectrum of
disorders, where the lines between are fuzzy and often overlapping. To the point
that each individual case is different and must be dealt with on an individual
basis, thus you can see why this stretches the patience of the one-size-fits
all, no-child-left behind, school systems. Here is a more simplistic answer to
question; what is Autism:
Autism is a complex neurological disorder that typically lasts
throughout a person's lifetime.
Autism now includes similarly related disorders that
are classified as Autism Spectrum Disorders –ASD, also called Autism Spectrum
Conditions – ASC and PDD or Passive Development Disorders? Perhaps you have
heard of Asperser's Syndrome, this is mild for form of PDD. Rett Syndrome
although rare and Childhood Disintegrative Disorder also fall within the ASD
classification. Then there is Tubular Sclerosis and Fragile X Syndrome. Perhaps
this web link may help you better understand?
http://www.nimh.nih.gov/health/publications/autism/nimhautismspectrum.pdf
Who
does Autism Affect?
Well, this is a very excellent question, the short answer is everybody; for
instance, here is what you will find if you search around on the Internet a bit:
It occurs in all racial,
ethnic, and social groups and is four times more likely to strike boys than
girls. Autism impairs a person's ability to communicate and relate to others. It
is also associated with rigid routines and repetitive behaviors, such as
obsessively arranging objects or following very specific routines.
Of
course, there is more to it than just the dry and clinical style Internet Site
answer. There too is a real emotional side. Here is a better answer written by
Joshua's mom Lori Kuhre:,
It is devastating for families, many parents will never hear
their child utter a word or ever hear "I
Love You Mommy and Daddy” never receive a hug or a kiss from the child they
love so much the child that is in their own world without knowing the love the
family has for them nor understanding it. Many will need care for the rest of
their lives, and never have a conversation with anyone they, will continue to
live their lives through frustration and tears, but
with therapies this can change. Unfortunately health insurance does not cover
these costs and this why it's necessary to raise money.
One very wise parent of an Autistic Child and educator
sums up the situation like this:
Autism is a complex neurological disorder that interrupts normal
brain function. As a life-long developmental disability there is essentially no
cure for spectrum disorders such as Autism. However with more research and
education those with Autism spectrum disorders can learn to manage their lives
and perhaps make better sense of the world.
Many unanswered questions lie in regards to identifying triggers
to autism spectrum disorders. No one case is identical. There are those whose
autism is triggered by environmental toxins, others believe vaccines have played
a huge role in the increasing occurrence of autism spectrum disorders. With
further research we may come closer to putting together the pieces of this very
intricate puzzle.
The Challenges Ahead
Autism rates are on the climb, three decades ago the
Autism rates were well under 1 in 2500 and in 2004 they were pegged at 1 in 182
and now a recent study indicates 1 in 150 children (age 8) in the United States.
There should be alarm bells going off everywhere. As
more and more children are born with autism, our society and civilization will
get further and further behind if we do not keep up with challenge.
Some folks in denial
claim that we are diagnosing more kids with ASD, because we are more aware of
it, and have classified other disorders in the spectrum and whereas this may
sound logical on the surface, there is still the definite and undeniable reality
that more kids than ever before are born with these disorders.
The economic impact is
huge, and comes a critical time for our already broken health care system, cash
strapped school systems and shifting demographics. The baby boomers need care
too, and with our aging population that is going to be a crisis in itself with
shortages of nurses and care facilities, it's already happening. Add on top of
this the increasing burden of autism rates.
The Need for Research
Autism research funding has fallen way behind and it needs a good shot in the arm to catch
up, we are talking about 1 billion dollars in research funding right now, just
to catch back up and then matching that every couple of years until we get a
handle on it. Since many similar syndromes, which may or may not be totally
related, but probably are have all been lumped together now in the same area of
study and now they are calling them the Spectrum of Autism Disorders, this makes
targeted funding a little more difficult. Each one individually needs to be
further studied and it is time we found the direct causes or the combinations of
causes that are being classified in the Spectrum of Autism Disorders.
Since the exact cause
or causes are not known, this should be one very important goal for the
scientific research, we must know what is causing it, so we can stop Autism or
as one group puts it;
DAN! "Defeat Autism
Now!" More research is needed
and money drastically needed for that endeavor. One concerned dad, Gary Kuhre,
whose heroic quest and love for his son we will discuss later in this book, puts
it very simply:
"If one in 150 kids were
suddenly being born without their left arm, there would be an immediate public
outcry and instant demand for billions of dollars in research, but since this is
Autism and its out of the public mainstream, it goes unfunded and unnoticed"
A true a statement
indeed and perhaps this truth is what brought about the quest to write this
book. One recent study and survey showed that Autism affects one in three people
in some way; in other words they have a family member, relative or close family
friend that has Autism, so what is the hold up on the funds for Autism research?
Are we to wait until this crisis, which many in the know are now calling an
epidemic reaches 1% of our population, because it will.
Even if Autism
research received the Billions of dollars it needs right now, the rate of
increase means we will see 1% of our population with some disorder in the Autism
Spectrum in well under 10-years. The CDC denies that it is an epidemic and by
strict definition they are correct, however, the explosive growth of Autism has
been like a lightning bolt through our society and too, the budgets of most
school districts. Simply ignoring this problem is not going to make it go away,
its only getting bigger each and every day. Margit Barreras sums it up like
this:
As Autism Spectrum disorders present so uniquely in each person
the challenge in addressing individual elements needed in an effective
educational program becomes evident. Progress will be slowed by lack of
education for parents, medical professionals and educators. Much needed funding
will help to accelerate this process and provide the services needed by those
whose lives are touched by Autism
Educational Special Needs
The costs of educating Autism kids is a huge burden on
our school districts and it costs literally millions of dollars in each school
year and many of these special educational need classes go on all-year overwhelming
budgets. Autism kids require all sorts of costly evaluations and professionals
such as psychologists, dieticians, neurologists, speech pathologists, pediatric
occupational therapists, cognitive behavioral experts, disability consultants,
and special education trained teachers w/assistants often 1 additional for every
5-8 students.
Educational Expert
Margit Barreras, explains that educators
face multiple challenges in understanding the neurological impact of spectrum
disorders. Areas of concern in the classroom are such things as:
·
Communication
·
Sequencing
·
Sensory integration issues
·
Transition difficulties