NEWS

Amber and Haley, are two young, inspiring women who have an extremely rare metabolic disease called Succinic Semialdehyde Dehydrogenase Deficiency (SSADH); there are only 400 cases of SSADH worldwide. Amber and Haley were the fifth and sixth cases to be diagnosed with SSADH in the USA.

Every day of their lives, Amber and Haley have to deal with real limitations in speech, gross motor skills, serious memory, and cognitive problems. Because SSADH is so rare, it has been difficult to bring people’s attention to it, making it challenging to get fundraising and pharmaceutical company support, but SSADH families are working hard to raising money on their own and fund research. Some of this research is taking place at Boston Children’s Hospital and other places around the world in the effort to find effective treatments and, hopefully, a cure.

The Le Vine family is holding a Wave of Hope – SSADH Fall Harvest Beach fundraiser on Sunday, October 22nd from 12:00 – 6:00 pm at the Columns Restaurant in Avon overlooking the ocean. Columns Restaurant is located on the corner of Ocean and Woodland Avenues in Avon. The popular band Spare Parts is playing and there will be a gift auction as well. You can get your tickets at the door for $35. Any donations from those who cannot attend are appreciated. For more information, please visit the website, waveofhope-ssadh.org or contact Professor Le Vine at wavehawker@gmail.com.

Donation is in support of the Le Vine family can be made at: https://www.ssadh.net/donate/

Thank you for your continued support!