2017 Wave of Hope
Sunday, May 21th, 1:00 - 5:00
The Columns, Avon by the Sea,
Ocean Avenue right across from the Beach
GREAT PRIZES, FOOD, AND ENTERTAINMENT BY THE BEACH MUSIC KIDS ROCK BAND & LOCAL FAVORITES WAITING ON MONGO
$25 tickets are available at the Columns, the Atlantic Club, by donating online and printing your donation form, and through the family and various other locations now and right up to walk ins the the night of the event.
Food, Drinks and Beer are being sold at extremely reasonable prices by The Columns for which we are so very grateful. Food is contributed by The Atlantic Club, The Columns and Brunos Pizzeria.
This is the link to the Wave of Hope Benefit web site
May 21st, 2017 our family and friends will be holding the 6th Annual Wave of Hope Benefit
at the Columns on Ocean Avenue, Avon, New Jersey from 1-‐ 5 pm to help fight
SSADH. We need your help! Amber and
Haley Le Vine are two 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. Regardless, we continue to remain
optimistic and determined to increase awareness and research for SSADH!
and Haley, now 27 and 25, are two lively and inspiring young women. Everyday of
their lives they have to deal with real limitations, such as, speech, gross
motor skills, serious memory and cognitive problems. Symptoms vary from one
SSADH diagnosis to the next, and many others have far more significant setbacks
to cope with throughout their lives. As their family, we desperately want to
find answers that will enable them to have lives like the many of us so readily
enjoy. We believe this may be within our
reach, especially with the right help, a little luck, and of course a wave of
have established the Wave of Hope -‐ SSADH organization, affiliated with the
national SSADH Association, which seeks to pool financial resources, raise
funds to pay for research, drugs and clinical trials, and writes grants to
achieve these ends. This also involves working with trail blazing doctors at
the National Institute of Health and Boston Children's Hospital. Presently, at
Boston $100,000 of money raised for SSADH has gone to new stem cell research.
Stem cells have been gathered from Amber, Haley, their parents, and other
patients; which are to be used to test out the effectiveness of new drugs on
these cells. Additionally, Amber and Haley are pioneer patients in a clinical
trial at the NIH of the drug SGS 742.
patients face a long, difficult road ahead of them searching for help and a
cure. Relentless, we have traveled to Johns Hopkins, NYU, Thomas Jefferson,
Boston Children’s hospitals and the NIH for extensive testing. We have
personally gone to Congress to petition for research support, implemented
awareness campaigns, and engage in countless fundraising.
We cannot make this journey alone. Our success depends heavily
on the donations and sponsorship of individuals and businesses alike, locally
and nationally. We are asking for your support through a donation that will
help us achieve our goals. This includes monetary donations, auction gifts, and
certificates. Your donation is tax deductible (SSADH Tax #37 – 1695651) and you
will of course be recognized at our benefit and in all our donor material. Auction donations need to be received by
May 12 and monetary ones by May 21st. Monetary donations should be made out to
the Wave of Hope -‐ SSADH Association. Mail donations to:
and Karen Le Vine (parents of Amber and Haley)
Avon, New Jersey 07717
if you prefer, arrangements can be made for items to be picked up in person.
Please contact us at 732-‐778-‐8930 or
732-‐778-‐8929 for any questions or assistance needed. If you would prefer
to make a direct donation to the SSADH Association please click here.
you for your time and consideration. We hope to gain your support and increase
your awareness about SSADH.
For more information please click here.
Amber, Haley and the entire Le Vine family
Asbury Park Press
The Coast Star
Two Rivers Times