Each year in August we have a fun celebration in honor of SMA month.
This year in addition to our regular festivities and food we're
enjoying a more casual dress to impress vibe and an all-you-can-eat
SHRIMP FEAST AS WELL AS LIVE MUSIC FEATURING JACKSON DEAN AND THE
OUTSIDERS. Join other revelers and supporters for an evening of
dinner, music, dancing, an open beer and wine bar, wine and beer
wheels, silent auction and raffle items and ALL-YOU-CAN-EAT SHRIMP! It
will be a special night of dancing, making memories, having fun and
raising hope. Attendees will learn more about SMA while members of the
SMA community will enjoy a night of support and comraderie. Offer
your support by purchasing tickets, serving as a sponsor or volunteer
or donating auction items. Then enjoy a night supporting those
affected by SMA. With your help, we can make a real difference and
have an amazing (and delicious) night of fun at the same time. Who is
Kaiden? The smile that lights up any room belongs to Kaiden. He is a
bright, happy one year old who loves to shake his head to any music he
hears. Diagnosed at six months with SMA Type 1, he is affected by his
illness but not defined by it. He is the inspiration behind our
mission of spreading awareness and helping others in their fight with
SMA. What is SMA? SMA is a disease that robs people of physical
strength by affecting the motor nerve cells in the spinal cord, taking
away the ability to walk, eat, or breathe. It is the leading genetic
cause of death in infants, affects approximately 1 in 10,000 babies,
and about 1 in 50 Americans is a genetic carrier. It's a energizing
time in the SMA community. On December 23, 2016, the FDA announced the
approval of the first-ever therapy for SMA. Spinraza™ (nusinersen)
is not only a treatment, it also addresses the underlying genetic
cause of SMA. A second treatment, Zolgensma is close to approval and
we are hoping by the event will be available for patients. However,
our work is not done. We must continue to develop and deliver
effective therapies that will change the course of SMA for everyone
affected — from infants to adults — and eventually lead to a cure
and we are excited to be supporting essential research. With your
help, we can make a real difference and have an amazing night of fun
at the same time. Sponsorships and Donations If you are interested in
sponsoring our event or donating an auction item, forms and
information are available here, or contact us at
info@fightingforkaiden.org or 240-426-7173. Hotel Rooms We have
reserved a block of rooms at a reduced rate - information and booking
will be available soon. FAQs Tickets Offer your support by
purchasing tickets, serving as a sponsor or volunteer or donating
auction items. Then enjoy a night supporting those affected by SMA.
With your help, we can make a real difference and have an amazing (and
delicious) night of fun at the same time. Purchase your tickets here.
Is there a special price for SMA Affected individuals and their
families? Yes - Thanks to our tremendous sponsors, SMA affected
individuals and up to two family members are free of charge and will
receive one hotel room at the host hotel. Please click on the "Get
Tickets" button, select the "SMA Affected Individual and up to 2
family members" ticket option and continue through the ticketing
process. For more information and to arrange for a hotel room, please
contact Kris at info@fightingforkaiden.org or 240-426-7173 I'm excited
to bid at the auction but how can I pay? We will be accepting all
major credit cards in addition to checks with ID and cash. How do I
donate an auction item or sponsor the event? Forms and information are
available here, Or for more information please contact the Fighting
for Kaiden Foundation at info@fightingforkaiden.org or 240-426-7173.
Are there ID requirements or an age limit to enter the event? ID is
not required to enter the event but will be required if you would like
access to the open beer and wine bar. Where can I contact the
organizer with any questions? If you have any questions or would like
more information, please get in touch with the Fighting for Kaiden
Foundation at info@fightingforkaiden.org or 240-426-7173. Do I have
to bring my printed ticket to the event? You do not need to bring a
printed ticket, though it may speed the entrance process. Is my
registration/ticket transferrable? Yes, please contact the Fighting
for Kaiden Foundation as early as possible so that we can know who to
expect. What is the refund policy? Please contact us if you need
to discuss a refund. Our goal is for everyone to have a wonderful
evening with us while raising funds, and if you are unable to attend
we will do our best to accomodate you. The name on the
registration/ticket doesn't match the attendee. Is that okay? Yes,
please try to tell us ahead of time, but you will still be able to
attend. What should I wear? Fun dress to impress. Be ready to dance.
Photo Policy: By registering/purchasing tickets for the Faces of SMA
Gala and Silent Auction, you hereby understand that you may be
photographed, videotaped, or digitally recorded, as may be your voice,
and hereby waive any objection, condition, limit, or right you may
have to the photographs or recordings. However, while the scientific
world now knows what causes SMA and what needs to be done to develop
effective therapies, they have yet to develop a treatment that works
for everybody. There are also issues with pricing and access to SMA
treatments. So our work is not done. We must continue to develop and
deliver effective therapies that will change the course of SMA for
everyone affected — from infants to adults — and eventually lead
to a cure.
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18/08/2019 Last update