Annual Benefit & The Final Columns Closing Party!

For Amber & Haley Le Vine to help fight SSADH

Location: The Columns
601 Ocean Ave, Avon-By-The-Sea, NJ 07717

We need your help! Amber and Haley Le Vine are two young women who have the rare metabolic disease SSADH (Succinic Semialdehyde Dehydrogenase Deficiency). SSADH has serious effects on memory, speech, and muscles. We continue to remain optimistic and determined to conquer SSADH.

Drink Specials – Auction

Delicious Entrees and Appetizers Courtesy of the Columns

Tickets $35 At The Door

Music by special guest The Pat Roddy Band

Amber and Haley, now 32 and 34, are two young lively inspiring young women who have the rare metabolic disease SSADH (Succinic Semialdehyde Dehydrogenase Deficiency). They were the 5th and 6th people out of only 400 worldwide to be diagnosed with it. Because it is so rare, it has been very hard to bring people’s attention to it, making it challenging to get fundraising and pharmaceutical company support. Everyday of their lives they have to deal with real limitations, such as speech, gross motor skills, serious memory and cognitive problems. As their family, we desperately want to find answers that will enable them to have lives like many of us so readily enjoy.

Enzyme replacement therapy is becoming a reality with clinical trials taking place within the year!! Amazing efforts continue in the United States at Boston’s Children’s Hospital Washington, State University. The Mayo Clinic, Baylor College of Medicine, Harvard Medical School, The Jackson Laboratory and oversees at justus-Liebig unersitatGieben, Germany and the University of Copenhagen, Denmark. We are getting closer by the minute to a possible breakthrough!! Help us get there!

Hopefully, there are answers out there to combat this disease. It is through your contributions that we can raise money to support and maintain these efforts to give “a wave of hope” for a better life for all who suffer from SSADH. WE CAN reach those goals and make a difference.

Donations to strictly fight SSADH go through the SSADH Association, a registered 501C.