
Iron Horse
Hoe Down A Success For Rett Syndrome
by Wendy Paddison, Michigan Rett Syndrome Access, October
12, 2003
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IRON HORSE
HARVEST HOE DOWN - Letter of thanks to everyone that made the
day possible and helped kick off October, National Rett Syndrome
Awareness Month.
On behalf of everyone at Michigan Rett Syndrome Access (Mi-RSA)
and the International Rett Syndrome Association (IRSA) we would
like to acknowledge all the people, organizations and businesses
with hearts of gold that put their sweat and soul into our first
major event. Although Michigan has one of the highest registered
populations of children with Rett Syndrome in the US, a few
months ago, the key special needs stakeholders here knew
virtually nothing about the disorder that is the #1 cause of
profound disabilities. There was no presence that our families
could look to locally. Many of our families are in desperate
need of support and services, but due to lack of local lobbying
and advocacy, many are overlooked to receive help. Our hope was,
that by bringing stakeholders together, that our families will
find it easier to BELIEVE in Better Days ahead for their
children.
The day was filled with three major components, Leap of Faith,
Hope for a cure and Charity from all corners of the community.
The weather was cold and overcast, but the attitudes were bright
and warm. We were bundled up and cold but we had a hot time. To
everyone and to the organizations that came out we are grateful
that you braved the unseasonably brisk temperatures and stuck it
out. The after affects of hurricane on the East coast hit
Michigan on Friday night that pulled the tent stakes out of the
wet ground. Hard-core family volunteers were pelted with ice
cold rain that kept us from setting up. Things turned cold on
Saturday that put a damper on attendance, those that did come
were power players. Over a dozen volunteer police motorcyclists
from Macomb County PDs showed to lead the bike run along with an
army of volunteers from the Christian Motorcyclist Association.
After waiting for the weather to die down a decision was made to
cancel the run due to the inclement conditions. They offered a
prayer for Scott Hunter who had to miss the event due to
emergency surgery. Scott had intended on driving in from
Maryland for the motorcycle run, he is the husband of IRSA's
director Kathy Hunter.
The event received a 2 page write up in the Oakland Press, was
in Suburban Lifestyles, Cruise News Magazine, Michigan
Motorcyclist Magazine, Midwest Motorcyclist and on numberous
disability, auto show and motorcycle club websites. It appeared
on Comcast Cable Weather Channel, on radio stations WYCD, W4,
WRIF and WJZZ in the local area, and on various stations
statewide as far as the Upper Peninsula. 200,000 flyers about
Rett Syndrome were distributed to medical professionals, schools
in the Metro Detroit area, hospitals and automotive and
motorcycle dealerships. Response was heard from as far away as
Ohio, Indiana, Illinois, New York, Wisconsin, Pennsylvania, and
Ontario. And two new children are known to be identified in
Michigan from the coverage.
Car show awards were given out in various categories. Two
recipients from Sterling Heights stayed the entire event. They
had never head about the disorder. One commented that in 20
years of attending benefit car shows this was the first time he
understood that it wasn't about the cars. The two winners did
not want to be identified. One of our recipients left before the
awards, the car club award was not presented since there were no
clubs registered. Following are those that received awards.
Unidentified, Sterling Heights, MI - 1952 Ford - President's
Preference
Unidentified, Sterling Heights, MI - 1960 Chevy - Classiest Ride
Denys Willet, Ortonville, MI, 1933 Ford - Raciest Rod
Denys Willet, Ortonville, MI , 1933 Ford - Distance Car
Enthusiast
John Waltman, Auburn Hills, MI, 1929 Ford Model A - Authentic
Antiquity
Larry Newman, Pontiac, MI, 36' Custom Rotissin' for Rett -
Modification Master
Bud Thomas, Rochester, MI, 1964 Ford Bronco - People's Choice
The entertainment was outstanding!! They put on a top notch
performance through gale winds, light rain and a short lived
snow flurry. They were dedicated to awareness of Rett Syndrome
and were true troupers. The entertainers, Benny & the Jets,
Chérie, Circus Dog, Jeff the Magician, Mark the Balloon Guy,
Phillips & Friends, Brad Lowe and especially Leap of Faith were
dedicated to the show going on. The bands played their sets and
each dedicated a song especially to our children. Circus Dog
performed there song "You Make Me Smile" that, although not
written FOR Rett Syndrome speaks of the discovery of the MECP2
gene on the X chromosome with it's words, "It's right there on
the X. Where everything connects." Cherie performed "Give A
Helping Hand". Detroit's own Benny and the Jets gave a good old
Rock and Roll "Bad Motor Scooter". Kevin Black joined Benny on
stage for some impromptu fun. The bands and skydivers went out
into the public and handed out 400 dinner tickets at local
businesses inviting them to the dinner to learn about Rett
Syndrome. WYCD and WRIF announced for everyone to come out and
share in the free concert. Freedom Hill County Park saved the
day by opening up the Independence Building banquet room. They
scrambled around setting up the banquet hall so that we could
move the dinner and awards to a warmer place. The food was
fantastic! Cranks Catering did an outstanding job and Ultimate
Rotisserie served out of this world rotisserie chicken and pork.
While everyone was mingling in the cozy banquet center, the
entertainers moved amongst the families and VIP guests from the
medical, educational and mental health communities signing
autographs and taking pictures with the children. They children,
who had a full day, knew that this was their time, and they
shined. The weather may have dampened the outside activities,
but inside attitudes were warm and bright. Spirits were high.
The formality that had been planned for the outside awards
ceremony was dropped. What followed was magical for everyone in
attendance. The attendees were taken on a rollercoster of
exhilaration at one moment and moved to tears the next.
The OPEN HANDS OF HOPE awards presenter, MI Representative
Steven M. Bieda (25th) gave a lovely speech on community
involvement and presented community involvement awards to; James
Perna on behalf of the Macomb County Parks & Recreation
Commission. Mr. Perna is also on the Macomb County Mental Health
Board; Lieutenant Robert Taylor accepted on behalf of the Macomb
County Sheriff's Dept.; and Bill Kohler gave a beautiful and
compassionate speech accepting for the Christian Motorcycle
Association. MI Dept. of Education Superintendent Tom Watkins
gave a fantastic speech and helped present and award to Dr.
Carol Swift, Dean of the Oakland University Early Childhood
Development program. They were nominated for their cutting edge
preprimary Lowry Center, an inclusive preprimary day school
program. Legislative awards were presented to Sen. Stabenow's
aid Bridget Johnson for going beyond the call of duty in coming
to the aid of a child with Rett Syndrome that was having her
Medicaid benefits endangered by sluggish paperwork, Patricia
Luker accepted in her absence. Wendy Paddison accepted a
legislative award on behalf of her daughter Noelle who was
acknowledged for attending the IDEA rally in Washington on
behalf of Rett Syndrome children and meeting with Sen. Kennedy &
Gregg's staff. Bridges4Kids director Deb Canja presented
an advocacy award to the Our Children Left Behind web team with
Calvin & Tricia Luker along with Nick Krishnan, son of Shari
Krishnan who accepted the award for his mother. Calvin Luker
gave a fantastic speech that has left me answering email after
email about Our Children Left Behind. Wendy Paddison, president
of Mi-RSA presented CAUSE advocate Roger Phillips with a
volunteer award. Roger is a great friend of children in
Michigan. He not only helped organize volunteers for the vent,
but helped round up children's entertainers and was a valuable
resource in planning. The International Guinness World Book
Record Skydiving Team Leap of Faith presented the medical award
to Michigan Neurological Disorders for their compassion and
understanding of Rett Syndrome. Research on the gene. MECP2 that
causes Rett Syndrome has lead to the discovery of the mechanism
that causes human cancer. Leap of Faith, an all cancer survivor
team, with leader Tony Albano, who is a highly energized and
inspirational personality and a sign language interpreter for
deaf skydivers spread a message that with a positive attitude
anything is possible. They were very dedicated in coming to
Michigan to share their enthusiasm for life with the special
needs children and families in Michigan. They obtained a $6,000
donation from AstraZeneca Pharmaceutical to fly them and country
western singer Kevin Black from Houston, Texas to celebrate the
discovery and to announce that Baylor College of Medicine Rett
Syndrome Blue Bird Center in Houston has announced a very
promising treatment for Rett Syndrome. They had everyone rise to
their feet and lead a cheer of "Right here. Right now. Rett
Awareness." The third cheer raised the roof off of the building!
Tony, who fought bone cancer, faith and hope reminded us to live
everyday with gusto. The team, who are developing an extreme
sport camp for handicapped and chronically ill children in Texas
knows that sometimes being special needs families things may
seem overcast and dark, but with a sunny outlook we can brave
the clouds and soar like eagles. The team's motto is
"Individually we are alone, but together we are strong",
encouraging families to come together for support. The whole
crew presented Noelle Paddison, poster child for the
International Rett Syndrome and 2003 Most Inspirational Pretty
Little Princess with an honorary membership into Leap of Faith.
There has only been one other honorary member that has been
inducted into the group, American Tour de France athlete Lance
Armstrong. Noelle is the only non-cancer survivor member, her
Teddy Bear will take her place in a tandem skydive. Noelle came
down sick prior to the presentation and had to be taken to the
hospital. Teddy Bear accepted on her behalf. Entertainer Kevin
Black, brother of Clint Black talked about his daughter
Courtney, who passed away in March at the age of 16 from
complications of Rett Syndrome. Kevin was moved to come all the
way from Texas to play a benefit concert here after he donated
Courtney's durable medical equipment to Noelle after her parents
were unable to obtain a special needs bed through Medicaid.
The OPEN HANDS OF HOPE plaques are given in acknowledgment to
people, organizations, or agencies that have gone beyond the
call of duty in improving the quality of children with special
needs that has contributed to improving the quality of life for
families and children that struggle with Rett Syndrome.
Nominations come from Rett Syndrome families from around the
Michigan area.
After the awards were presented, the weather became more
cooperative and everyone moved back outside where Karli, the
band and their dancers put on a full stage production. They were
joined by Kevin Black for an inspirational first time
performance of "Why Fly" dedicated to our special needs
children. The song rallied everyone to remember that the future
is hear and now, and tied into the message from Leap of Faith as
they duo sang "Why walk when we can run. Why run when we can
fly." Kevin Black then ended the day with a lively and moving
solo concert of his latest CD interspersed with personal
antidotes as a father of two boys and his beautiful daughter
Courtney.
The weather forced us to take a loss financially, which was a
disappointment. Expectations were high towards raising money for
Rett Syndrome research, but with the help of some great friends
our ambitious statewide goal, kicking off October, National Rett
Syndrome Awareness Month was an overwhelming success. The event
was announced on an unknown number of disability, motorcycle,
car show and music industry websites. Articles appeared in
Michigan/Midwestern Motorcyclist Magazine, the international car
show magazine Cruise News and Suburban Lifestyles and even as
far away as the Ohio/Pennsylvania boarder. Police officers and
city personnel in 15 communities from Oakland and Macomb
Counties were educated on the disorder. The Christian
Motorcyclist Association, with a 96,000 count membership has put
our children and hope for a cure on their prayer lists. The
marque at Freedom Hill announced the words "Rett Syndrome" for a
month on Metro Parkway, which sees traffic from some 60,000 cars
a day. Comcast Cable ran a crawler on the Weather Channel, radio
stations as far away as the Michigan Upper Peninsula ran public
service announcements, and an interview with Doug Massey and
Wendy Paddison was run every Sunday on several Metro Detroit
radio stations. Radio stations nationwide announced October as
Rett Syndrome Awareness month. We educated vast numbers of
people about the devastating disorder that affects our
daughters. The contacts and networking made this year will lead
to greater involvement and support for our families.
A lot of work went into putting together the event. We received
rave reviews from Macomb County Parks & Recreation. They stated
that, for a first time and being a small group, we did a
smashing job of putting together one of the best planned and
organized events. They felt it was the highlight of their
season. They are putting our event in for a nomination with a
national parks and recreation award. We were also given
accolades for how we kept the event together regardless of the
miserable weather. They backed us 100% and are excited to extend
their assistance next year, and a better date. There are some
great plans in the works for next year. Many of the performers,
who had no previous knowledge of the disorder have vowed to come
back with their friends while they spend the next year educating
their industry friends - we are just going to have it at a
warmer time of the year! Please visit the entertainers websites
and send them a letter of thanks for supporting special needs
children in Michigan. They all donated their talents and time to
make it a great day. Organizations from varying disabilities and
support agencies showed. Several groups played a big part in the
day and need mention, CAUSE, Bridges4Kids, Autism Society
of America - Macomb County Chapter, Michigan Angelman's
Association, The Abilities Center, Children's Therapy Fund,
Rainbow Connection, Paint A Miracle. Our gratitude goes out to
their dedication. We hope to see them and many others next time
around.
Our Rett Syndrome families are planning several smaller events
throughout the next year and are looking forward to starting a
volunteer speaker's committee that will out into the educational
and medical community to speak to groups about Rett Syndrome.
Radio and Television stations have promised to broadcast from
the event next year.
Very special acknowledgment goes to Ace Hardware, Audio
Reflections, AstraZeneca Pharmaceutical, Autism Society of
America - Macomb County, Bethesda Christian Church- Sterling
Heights, Better Made Chips - Livonia, CAUSE- Lansing, Cook's
Farm Dairy - Ortonville, Cruise News, Detroit Popcorn Factory,
Dillman & Upton Hardware - Rochester, DMC Photography - Texas,
EZ-Que, Inc.- Auburn Hills, Families First - Berkley, Folger's
Farm Market - Oakland Township, Freedom Hill County Park -
Sterling Heights, Frog Country 101.5 Iron Mountain, Penske Truck
Rentals, Hampton Inn - Sterling Heights, Home Depot - Rochester
Hills/Auburn Hills, Katherine's Catering - Rochester, Kowalski
Meats - Hamtramick, Midwest Freefall - Macomb County, Midwestern
Motorcyclists Magazine, Oakland Press, Paint Creek Cider Mill -
Rochester, Party City - Rochester, Suburban Lifestyles -
Rochester, Specialized Orthotics - Clinton Township, Steve Katz
- Livonia, Sure-Wood Flooring - Lake Orion, The Weather
Channel/Comcast Cable, Tom's Hardware - Oxford, Uncle Buck's
Party Rental -, Ultimate Rotisserie Grills - Auburn Hills, Wild
Wind Skydiving, WYCD 99.5 Detroit/Bob Schuman/Doug
Massey/Infinity Broadcasting, W4 Country 102.9 Ann Arbor. The
Altshuler (Ann Arbor), Carlisi (Mt. Clements), Crosby
(Rochester), Hawkins (Lansing), Hallek (North Branch), Lewis
(Waterford) , Milano (Youngstown, OH), Mulka (Sterling Heights),
Paddison (Rochester Hills), Shinaberry (Rochester Hills),
Waltman (Auburn Hills) and Woodcraft (Cincinnati, OH) families.
Wendy Paddison, Volunteer Director
Michigan Rett Syndrome Access
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