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Article of Interest - Rett Syndrome

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Bridges4Kids LogoBenefit to raise money for Michigan agencies and Awareness for Rett Syndrome
by Wendy Paddison, Michigan Rett Syndrome Access, August 21, 2003

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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 or www.rettsyndrome.org/sec/motorcycle.htm.

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. 

   

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