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Old 08-16-2007, 10:21 AM
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lundrs lundrs is offline
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Join Date: Apr 2007
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Default Thank You to Captian Ace!

On Monday, September 10th, 2007, my family will be hosting the 1st annual MAGIC Foundation Golf Outing in honor of Devan Hanks. The event will be held at the Normanside Country Club in Delmar, NY. We will be raising funds for the MAGIC foundation, a not for profit organization that raises funds for research for children and adults living with a genetic growth disorder.

Devan, my granddaughter, is the 2 year old daughter of Becky (Sievert) Hanks and Bobby Hanks. Becky and Bobby both grew up in Bethlehem and currently reside in Glenmont. Their daughter, Devan, has a rare genetic growth disorder known as Russell Silver Syndrome (RSS). RSS is a disorder present at birth that involves poor growth, low birth weight, short stature, lack of appetite, hypoglycemia (low blood sugar), and differences in the size of the two sides of the body. RSS occurs in approximately 1/75,000 births. It is one of 200 types of dwarfisms and one of five types of primordial dwarfisms. It is one of the few forms that are considered treatable.
It was because of Devan’s Russell Silver Syndrome that led Becky and Bobby to the MAGIC Foundation. The MAGIC Foundation is a national organization created to provide support services for the families afflicted with a wide variety of chronic and/or critical disorders, syndromes and diseases that affect a child’s growth. Some of the diagnoses are quite common while others are very rare. MAGIC continues and develops through membership fees, corporate sponsorship, private donation and fundraising .The money raised will go into a fund in Devan’s name to offset the cost of her trip to an annual convention in Chicago to meet with the top specialists about advances in treatment of Russell Silver Syndrome. The convention also acts as a networking tool for her parents. Any money raised beyond the cost of the trip will be used as a scholarship for another family affected by a growth disorder, to attend the convention.
The reason I am posting this is to, first, thank Jimmy Samia “ Captain Ace” of Ace Charters. Jimmy, after only speaking to me by cellphone, boat to boat on the Hudson and emailing one another about the fishing conditions on the Hudson, read an email blast about our event, Jimmy graciously donated a charter on the Hudson during striper season. I wanted to publicly thank him on this website for his generosity. I am sure that all of you who have children and grandchildren are aware as to have devastating it is for a family to have a child who is ill. Our family is dedicated to helping Devan and my daughter in making life a whole lot better for her.
Thank you again, Captain Ace. If there are any other fisherman who would like to donate a charter, have any questions, or would care to make a donation to our event please contact me at [email protected]
If you would care to read more about my granddaughter you can visit her website at www.caringbridge.org/visit/devanhanks We are asking that donations for our event be made to : Rebecca Hanks, 29 Jefferson Rd.,Glenmont,NY 12077.

Ron S.
Delmar, NY


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