|
 Benefit
to raise money for Michigan agencies and Awareness for Rett
Syndrome
by Wendy Paddison, Michigan Rett
Syndrome Access, August 21, 2003
For more articles like this
visit
https://www.bridges4kids.org.
MI
Benefit for Rett Syndrome:
Iron Horse Hoe Down
This event will take place on October
4, 2003 in Sterling Heights, Michigan and will feature
a concert by country singer Kevin Black, a screening of
the Julia Roberts documentary "Silent Angels", motorcycle run,
car show, silent auction, and Family Fun Day. Michigan has the
highest rate of Rett cases in the country. Often misdiagnosed as
cerebral palsy, autism, or Angelman's Syndrome, Rett is the
number one cause of profound retardation in females. Males
usually die in infancy.
MICHIGAN GIRL
WITH RETT SYNDROME TAKES PAGEANT TITLE
Rochester Hills resident Noelle Paddison, 12, has Rett Syndrome.
Her disorder is a debilitating developmental disorder that is
caused by a mutation on the X- chromosome. The disorder has
taken away her ability to speak and move her body. She has grown
to be a bright and beautiful young lady despite the challenges
of having multiple disabilities. She is thriving, learning new
skills, and is homeschooled by her mother with a help of a
remote schooling program. Although she needs assistance in all
activities, she isn't letting that stop her from doing the
things little girls love to do. She loves swimming, shopping,
listening to music, and watching videos with her friends and
boys. She was recently highlighted in the July edition of
Exceptional Parent Magazine and the summer edition of the
International Rett Syndrome Association RettGazette. Last month
she competed in a children's pageant along side 37 typically
developing girls and was crowned Starfire Pageant's "Most
Inspirational Pretty Little Princess." Noelle has difficulty
walking, and needs assistance. She trained all spring and summer
to be able to walk across the stage with as little help as
possible. She was able to not only walk across the stage, but
was able to walk up the steps to accept her sash and trophy.
Noelle was named Rett Syndrome cover girl child by the
International Rett Syndrome Association. Children with Rett
Syndrome need extensive physical, occupational and communication
therapies to obtain their full potential. Many children in
Michigan with the disorder are denied services because of
negative attitudes and outdated information about the potential
of the children.
RETT SYNDROME RESEARCH IS DOORS TO UNDERSTANDING OTHER
DISORDERS
Rett Syndrome is a devastating neurological disorder that
affects primarily females between 6-18 months of age. It leaves
them unable to speak or move and the children must rely on
caregivers for all activities of living. Males generally do not
survive to birth. Males born with the gene are much more
impaired than their female counterparts and usually die before 2
years of age. The emotional, physical, and financial needs on
the families are exhaustive. Michigan has one of the highest
registered populations of children diagnosed with the disorder.
Although it is the number one cause of profound retardation,
even about more well known disorders such as Down's syndrome,
many in the medical community and general public have never
heard of the disorder. People that hear the words Rett syndrome
often confuse it with Ryes syndrome or Tourette syndrome.
Children are often misdiagnosed with autism cerebral palsy,
unspecified developmental delay or a disorder that looks like
Rett syndrome in the early years, Angelman's syndrome. Most
children with Rett Syndrome will loose the ability to talk, walk
and use their hands. For most, the only mode of communication is
to use their eyes to point. The disorder is complicated by
scoliosis, seizure disorders, breathing dysfunction, difficulty
swallowing and chewing and digestive issues. The gene that
causes Rett syndrome was discovered in October 1999. Since its
discovery, it is being called THE ROSETTA STONE of genetic
research, and has unlocked doors to understanding other
disorders such as ADHD, schizophrenia, Sudden Infant Death
Syndrome, autism, Aspergers, and other neurological disorders.
Research information from the medical community shows that MECP2
has led to discovering the mechanism that causes human cancer.
OCTOBER IS NATIONAL RETT SYNDROME AWARENESS MONTH!
The International Rett Syndrome Association (IRSA - Clinton,
Maryland) and Michigan Rett Syndrome Access (Mi-RSA - Rochester,
Michigan) are holding a statewide awareness campaign. The month
of October will kick off with an all out extravaganza event,
IRON HORSE HARVEST HOE DOWN that will bring together the special
needs community, advocacy organizations, pediatric specialists,
and state educational system.
The event will be held at FREEDOM HILL COUNTY PARK, Metro
Parkway, Sterling Heights, Michigan, October 4, 2003, and will
host an INCLUSIVE FAMILY FUN DAY that will start off with a
police escorted autumn color motorcycle run that will highlight
notable Michigan harvest spots. Rett syndrome biker fathers
Jason Paddison, Brian Halleck and Scott Hunter will be leading
up the run to bring awareness to the devastating disorder that
affects their children. The run is supported by such groups as
The Christian Motorcycle Association - Resurrection Riders,
Rolling Thunder, Motor Maids, Woman On Wheels, Independent
Motorcyclist Association, Michigan Motorcyclist Magazine,
Midwestern Motorcyclist Magazine and others. Bikers of all
brands are asked to come together to support the cause.
Preregistration for the run by credit card 1-800-818-RETT
FAMILY FUN DAY highlights include children's activities,
entertainers, games & kiddy rides; concession stands with
proceeds to local children's charities, visits by costumed
characters, Medieval village, Benefit Car Show, Silent Auction,
Rotisserie Barbecue, DJ & Dancing through out the day, and
performances by Michigan's Premier illusionist, JEFF THE
MAGICIAN; known for his puppets on the nationally syndicated
show "HOT FUDGE," puppeteer Brad Lowe's Fantasy E-FEX Puppets
will make an appearance as will Michigan Jugglers, Phillips &
Friends. Detroit's own Rock & Rollers BENNY & THE JETS and
Macomb County's own patriotic country singer CH'ERIE, who has
been making the air waves on such radio stations as W4 and WYCD
will play along with Reggae-Happy-Rock Ohio band CIRCUSDOG.
Special tribute concerts for a cure for RETT SYNDROME by Texas
Country Western Star and brother of Clint Black, KEVIN BLACK,
whose daughter recently passed away from complications from Rett
syndrome and hot new Country-Rock up and comer, KARLI who has
been taking Nashville's breathe away.
Car enthusiasts of all varieties are encouraged to display their
cars. The first 100 cars will receive a dash plaque. The public
will vote on their favorite car.
The World Record Sky diving formation team, LEAP OF FAITH,
through the support of GIFT OF LIFE AIR TRANSPORT will make an
appearance and attempt a formation to bring awareness to the
recent finding, that the research on the MECP2 gene that causes
Rett syndrome has shed light on the mechanism that causes human
cancer. Members of the team are all cancer survivors.
IRSA President and Founder, Kathy Hunter, along with Wendy
Paddison, Volunteer Director of Mi-RSA, a volunteer run
advocacy, resource and referral service based in Rochester
Hills, will give a presentation on the newest information on the
disorder and will present OPEN HANDS OF HOPE awards to people
and organizations in the state of Michigan that have contributed
to a better quality of life for children with the disorder and
their families.
The benefit is looking for 501 c 3 organizations and agencies
that would be interested in running concession and game booths
to raise money for their organization. Corporate sponsors are
welcome. More information on Rett syndrome, MECP2 and the IRON
HORSE HARVEST HOE DOWN can be found at:
http://hometown.aol.com/michrettsyndrome/ironhorsehoedown.html
or www.rettsyndrome.org
Donations: IRSA - MICHIGAN BENEFIT, 9121 Piscataway Suite 2B,
Clinton, Maryland, 20735
Contact Information: Wendy Paddison, Volunteer Director
Michigan Rett Syndrome Access
IRON HORSE HOE DOWN
Phone: 248-342-1301 Fax 248-608-6383 Email
michrettsyndrome@aol.com
Photos available for publications. Interviews by request.
back to the top ~
back to Breaking News
~ back to
What's New
|
