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Restaurant group serves helping of generosity, raising money for IDefine
This is the
season of
giving, but
the owner of
the Mecha Noodle Bar
has
developed a
program that
allows it to
help others
all year
long, and he
is
encouraging
other
restaurateurs
to get into
the spirit.
Tony Pham
opened the
first Mecha
Noodle Bar –
which means
mom and pop
in
Vietnamese –
a decade ago
in
Fairfield,
Connecticut
to pay
homage to
his mom and
dad. He was
also
motivated to
do good.
Growing up,
Tony’s
younger
sister had
special
needs and as
the older
brother in
an Asian
household he
always felt
a
responsibility
to care for
her.
“Before I
even had the
opportunity
to open up
the stores,
I knew that
I was going
to do
something
more than
just
business,”
said Pham.
“I was going
to show how
small
businesses
can make the
biggest
impact and
help
others.”
Mecha Noodle
Bar now has
seven
locations in
the
northeast –
including
two new ones
in Boston –
and Pham is
delivering
on his plans
through a
simple, but
powerful
program
called Eat Justice.
Every month,
Mecha
donates 50
cents of
each bowl of
ramen sold
to support a
cause
selected by
its staff.
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Call for participation for a
sleep study on KS
Sleep problems are often reported in
people with Kleefstra syndrome.
However, little is known about their
quality of sleep. The aim of this
study is to get a better general
overview of the quality of sleep
within Kleefstra syndrome.
We are looking for participants
for an inventory study on sleep
within Kleefstra syndrome. Anyone older than 3 years with Kleefstra syndrome
can participate in this study.
Participation is voluntary.
What is
required?
We ask
you to fill out a questionnaire on
sleep and to keep a sleep diary for
a period of 2 weeks. Both the
questionnaire and sleep diary will
be provided and can be completed by
the parent/guardian of the
participant
The questionnaire takes about 30-45
minutes to complete. The sleep diary
only requires a minute every morning
for a time frame of 2 weeks.
Do you want to
participate?
Please
contact us at sleep.gen@radboudumc.nl
For any remaining questions about
the study, please contact our
research team, led by prof.
Tjitske
Kleefstra:
sleep.gen@radboudumc.nl
In the course of 2023 a
complementary study on sleep in
Kleefstra syndrome will be
launched, led by
Dr.
Siddharth Srivastava and Zoë
Frazier. Boston-based
participants are welcome to
participate in both
studies,
we closely collaborate and join
our efforts here! |
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Florida students recognize KS Awareness
For the second year in a row, the Marco Island Academy
in Florida turned purple around
Kleefstra Syndrome Awareness Day in
September, and students sold KS
Awareness bracelets, held a Big
Purple bake sale and accepted
donations to raise money for
IDefine. The effort was spearheaded
by 78 members of the school’s Key Club
and embraced school wide. In all,
the students raised $1,082.
Lori Galiana, the faculty advisor to
the Key Club, presented a check for
IDefine to Matt and Maria Lockwood,
the parents of 5-year-old Wynne, who
has KS, when their family visited
the school on Dec. 9.
“The students have really embraced
and connected to this effort,” said
Galiana. “We showed the students a
video about Kleefstra Syndrome,
they’ve explored the IDefine
website, and they’ve seen Wynne’s
progress, they know her story.”
The students became aware of KS
through Marie Lynn and Ray
McChesney, Wynne’s grandparents.
Marie Lynn is an advisor to the Key
Club through the Kiwanis.
“We love Mrs. McChesney – I think of
her as another grandma – so once we
learned about Wynne we would do
anything to help and got the school
involved,” said Taylor Drott, a
senior at Marco Island Academy and
president of the Key Club. “Once
everyone met Wynne last year and saw
the impact we could make, they
wanted to do it again. We didn’t
bring it up, people were asking us
when Wynne was coming back.”
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Quick Clips on Kleefstra
-
Committee
Formation:
IDefine is pleased to
announce the formation of a
committee focused on
diversity, equity, and
inclusion. Would you
like to be involved in
assisting us with this
important initiative?
Please reach out to
unlock@idefine.org to
discuss further!
-
2022
Kleefstra Syndrome
Census
Project: We
will conduct this patient
census to establish a
baseline of where we are as
we kick of 2023, and then to
conduct a quarterly review
to track our community
growth. To do this, we
will be utilizing
the Kleefstra Syndrome Worldwide Map. At
the beginning of the month,
we were at 103, and we have
grown to 248....let's keep
growing! Please take
the less than 5 minutes to
be counted! We look forward
to sharing the update and
breakdown by country!
-
End
of Year
Giving: We
announced on Giving Tuesday,
November 29th, that we had a
goal of raising $100,000
between then and the end of
the year. We are 70% to our goal!
2023 is shaping up to be our
biggest year yet in building
a brighter future for our
loved ones with Kleefstra
Syndrome, and we need you
and your networks support!
Every gift matters!
-
Host
a Fundraiser and Get
Involved: We
invite you to lean into our
effort to build a brighter
future for our loved ones.
IDefine is seeking help for
conference planning,
community development, and
fundraising. If you
are interested in helping to
push our initiatives
forward, please reach out
today at unlock@idefine.org.
Help define a new future!
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IDefine, Inc
925B PEACHTREE STREET NE BOX 2173 | Atlanta, Georgia 30309
unlock@idefine.org |
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