Wave of Hope
Raised close to $25,000
Holiday Benefit
The Headliner, Neptune N.J.
Thursday, December 29th, 2011
7 - 11 p.m.
Live Entertainment is being provided by The Pat Roddy Band (awesome, fun loving Jersey Shore group) and Paul Cilinski (famous Jersey and Florida Keys singer, known for his Jimmy Buffet tunes)
$25 tickets are available at the Headliner and through the family and various other locations now and right up to walk ins the the night of.
Drinks and Beer are being sold at extremely reasonable prices by The Headliner. Happy Hour prices by the Headliner to contribute. Food is of light fare and provided due to the generosity of Tim McLoone's Restaurants and The Atlantic Club.
Amber and Haley Le Vine are two young women who are diagnosed with SSADH (Succinic Semialdehyde Dehydrogenase Deficiency). It took seven years and five major hospitals to identify, finally, at Johns Hopkins in Baltimore that they both had this, in 1996. At that time, they were identified as the fifth and sixth patients in the United States. Since then a total of about 350 SSADH people worldwide have been recognized.
They are two very lively, bright, energetic young women, now 20 and 22, who struggle with speech, gross motor and serious memory problems. Every day of their lives they have to deal with these very real limitations. As their family, we desperately want to find answers to enable to have lives closer to those like the rest of us enjoy and take for granted. It has been through the research and medical efforts of Dr. Geoff Chimsky, Dr. Phillip Pearl, Dr. Michael Gibson, and others that we have pursued answers and hope since then. The PND (Pediatric Neurotransmitter Disease) Assocation has been vital in assisting these efforts through conferences and with grants in spearheading the efforts to combat this disease. The support of this organization and these organizations has enabled Amber and Haley to made some strides against the effects of SSADH.
In recent years Amber and Haley underwent extensive testing at the National Institute of Health in Washington, D.C. as part of grant to seek out medical ways to combat this disease. There is some hope that clinical trials of a useful drug may be undergoing sometime soon and that other answers are under way. There isn't a big national voice for this small group of afflicted SSADH patients - many people have never even heard of this disease. Our goal is to change this and to get them the national attention and help they so deserve. Amber and Haley, and our family would appreciate anything you can do to help us. Through your contributions, we can raise money to support and maintain these efforts to give to hope for a better life to Amber and Haley and to all the other children and adults that suffer from SSADH and we can reach those goals and make a difference.
For more information about the Wave of Hope please click the fillowing link: Wave of Hope
The money raised goes directly to the PND Association to help improve current treatments and find a cure.
Please see the articles below regarding the LeVine Family and the Wave of Hope event.
Asbury Park Press
The Coast Star
Two Rivers Times
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