For those coming to this blog for the first time... Mr Awesome and I have three children - our oldest son Ayden has a dual diagnosis of Fragile X Syndrome and Autism, while our youngest daughter Emmalina also has Fragile X Syndrome. Our middle son, Issac is not affected by Fragile X.
Fragile X Syndrome (FXS) is the the most common genetic cause of autism and autsim spectrum disorders (ASD) as well as the most common cause of inherited intellectual impairment. The syndrome itself is a genetic disorder caused by a mutation on the X chromosome. When the FMR1 gene of the X chromosome becomes fully mutate, Fragile X Syndrome results. Much like autism, fragile x syndrome is a spectrum disorder. Language delays, cognitive and intellectual disabilities, as well as a variety of behaviorial and physical characteristics are some of the symptoms of FXS. Each affected person can range from mild to severely affected in these areas with boys usually being more affected than girls. You can learn more information by browsing through this blog or visiting the National Fragile X Foundation website, fragilex.org
Now that you know a little about Fragile X....onto the event!
When: July 21, 2013 at 2:00 PM
Where: Valhalla Park, Holt MI
Valhalla Park is located in Holt, just a few minutes south of the south Lansing Meijer. From Meijer, follow Cedar St south until you come to Aurelius Rd, go through the intersection and then turn left onto Keller Rd (just past the CVS pharmacy) and follow that until you come to the park.
The park is one of our favorites to visit in this area. During the event, there is much to do in the park itself....
During the summer months, a beach and swimming are the focal points of the park. Next to this area are bathrooms and changing rooms. Adjacent to the beach is a large, semi-wooded, picnic area and a new playground that was finished in 2009 . Other warm weather facilities include three softball diamonds, a nature trail, and fishing areas on both the lake and the pond. A large group picnic pavilion is also available on a rental basis.
In addition to all the features of the park, we will have the following events. Each event has a small associated cost and all proceeds will go towards Fragile X Syndrome (this IS a fundraiser after all!)
Motorcycle Rides courtesy of Ride and Sing with Sonic Boom: Rides will be $10 for children 8 and older. Younger children will be allowed to have a shorter, slower ride for $5 on a case-by-case basis dependant on how well they sit still and follow directions. You can read the full information packet here: http://goo.gl/Nr7yk
PLEASE NOTE: Everyone MUST wear a helmet, long pants, full shoes (no flip flops, sandals, etc) and kids must wear either a jacket or something with long sleeves. Safety first! There is a bathroom/changing area at the park to change into appropriate clothing.
Each rider will also need to sign a waiver which you can view/read ahead of time: http://goo.gl/MrjMJ
Art Auction: Ryan Lee has graciously donated an additional art piece that we are auctioning off on eBay with all proceeds going to the event as well. You can view the auction HERE.
You can view more of Ryan's work on his blog or facebook page.
Thirty-One Gifts Fundraiser: You have from now until July 21 (day of the event) to order. At the close of the order one random order will receive the hostess credit from the party as well. To view a full selection of products, details and product options, view the catalog on-line at http://www.mythirtyone.com/hbrand
To shop directly for the fundraiser, go to the website above and click on the parties link then select "A Day at the Park: Fragile X Fundraiser Event".
Monetary Donation: You can make a monetary donation the day of the event as well as online. All donations are tax deductible. To make an online donation, follow this link: http://www.firstgiving.com/fundraiser/adatp
Raffle: Raffle tickets are $2 per ticket and can be purchased the day of the event. The raffle itself will take place at 3:00 PM under the main pavilion in the park. You must be present or have someone there who can choose/pick up the item for you to win. If your ticket is drawn you will have the chance to choose the item you would like. The more tickets your purchase, the higher chance you have of your ticket being chosen sooner and you being able to select the item you want most!
Here are the raffle items we have available, you can view more information about each item by going to the facebook gallery located HERE.
Here are the raffle items we have available, you can view more information about each item by going to the facebook gallery located HERE.
All proceeds from the event will benefit the Fragile X Association of Michigan and the National Fragile X Foundation.
FXAM is a parent-led LINKS support group of the National Fragile X Foundation and a 501(c)3 non-profit. Tax ID #56-2450171
http://www.fxam.org/
The National Fragile X Foundation is a 501(c)(3) non-profit. Tax ID #84-0960471
http://www.fragilex.org/
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