Angelman Today January / February edition 2014 | Page 40

Angelman

Today

Angels Week Off
Enter to Win
3 days 3 nights in San Francisco, CA
Staying at a 5 Star Hotel
3 days 3 nights in Napa Valley, CA
“Live in the Vineyard” Music Festival

San Francisco, CA
ANGEL'S WEEK OFF ...
Since our daughter's Angelman
Syndrome diagnosis in 2007, my
wife and I have embraced the
community of people who share
our journey. We've been
fortunate to have had helping
hands around us when we needed
them. We've tried to be those
hands to others whenever and
wherever we could. The road is
difficult for caregivers of people
with special needs ...and it never
really ends.
In 2010, we started our own n onprofit 501c3, The Angel Wings
Foundation. The truth is we held
and hosted so many benefits and
contributed to so many other
non-profits we simply needed a
secure and transparent place for
money to go while we decided
how to direct it. The first few
Bella Bashes were accounting
nightmares. Money was
changing hands and we wanted
people to know where it was
going and how it was being used.
I have literally had people walk
up to me after a concert and just
hand me a wad of cash to apply
toward "Angelman Syndrome". I
don't like having those kinds of
grey areas in my life.
WWW.ANGELMANTODAY.COM

Napa Valley, CA
Our little foundation doesn't take
in a lot of money and we don't
actively raise a lot of money. We
do a few benefits a year and we
try to keep our support as local as
possible. We've funded therapy
programs at the Vanderbilt
Kennedy Center. We've helped
Tennessee residents with IEPs and
other services. We've made
awareness videos and contributed
to all the other Angelman
Syndrome related foundations. We
attend every Angelman function
we can get to and we help
wherever we can.
In the coming years, we intend on
refining our focus and expanding
our reach. But we still think of
ourselves as just here to help. The
larger Angelman foundations are
doing some amazing things and
breaking some much anticipated
new ground. We are cheering
them on whole heartedly. But in
the meantime, while we all wait
on the next exciting breakthrough
or therapy, and while we
continually connect with each
other to discuss everything from
recipes to bedtimes, time slips
through our fingers and fatigue
sets in. Days turn into months
...then into years. Sometimes, we
as parents just need a break.
Yolanda and I were discussing this

very thing this summer when we
kind of hit on an idea ...

We decided to offer something
through our foundation that
might be just the ticket for
someone. We're giving away
what we're calling an Angel's
Week Off. We're giving away a
vacation, basically. Three days
and three nights in San
Francisco, at a five-star hotel.
Then, three days and three nights
at a music festival in Napa
Valley. It's called "Live In The
Vineyard" and it's three days and
nights of live music, amazing
food and wine tastings. Former
artists who've been at this event
include, Alanis Morisette, Lenny
Kravits, Daughtry, James Blunt,
Zack Brown Band, Plain White
T's, Colby Calait, and the list
goes on and on ...and on. The
event is spectacular and we can
think of nothing better than the
Napa Valley, music and world
class wine to give two of our
fellow beleaguered Angelman
parents a chance to exhale and
recharge.
Many Angelman parents have
never even been away from their
Angels for one night. We
understand how difficult it might
be for some to trust a third party
January / February 2014