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Article of Interest - Rett Syndrome Success

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Iron Horse Hoe Down A Success For Rett Syndrome
by Wendy Paddison, Michigan Rett Syndrome Access, October 12, 2003
For more articles like this visit https://www.bridges4kids.org

 

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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