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Since Darrick and Tiffany Reed of Olathe, Kansas received their daughter 9-year-old Brianna’s Kleefstra Syndrome diagnosis in early 2018, they have been taking steps to learn more about KS, connect with other KS families and raise money to help identify treatments.
In October, the Reed’s held their third annual Brianna’s Brigade, a fundraising walk benefitting IDefine. This year’s event raised more than $12,0000.
“Brianna's Brigade is important to our family because it allows us to accomplish three important things through the event,” said Darrick. “First of all, it's Brianna's ‘Big Day’ where she feels special and can spend time with family, friends, teachers, therapists and all of those who are making such a positive impact on her life.
“Secondly, it provides an opportunity for us to say ‘thank you’ to those individuals who have invested so much into her life. And finally, it allows us to fundraise for the entire Kleefstra community and make an impact for all of those impacted by this condition, which is important to us.”
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Our vision for a better world is one
in which our loved ones with
Kleefstra Syndrome are provided the
opportunity to reach their potential
by way of:
- A supportive, community
ecosystem
- Quality, coordinated clinical
care
- Targeted treatments to offset
the impact of Kleefstra Syndrome
This Giving Tuesday, we would love your support!
Here are 5 suggested ways in which
to GIVE:
- GIVE TIME:
Volunteer to grow and strengthen
our community
- GIVE YOUR VOICE:
Advocate for KS through
legislation or letters of
proclamation
- GIVE MONEY:
Donate to help fuel our mission
- GIVE SKILLS:
Help our organization progress
through your expertise
- GIVE INSPIRATION:
As with the butterfly effect,
your actions can create big
actions downstream. To the
parents: Never underestimate yourself as the parent of a child with special needs
If you are inclined to donate, Meta
will be matching up to $7 million
dollars to eligible nonprofits on
Facebook! Matching for Giving
Season begins on November 15, 2022
and goes until December 31, 2022, or
until the $7 million match fund is
spent.
Our goal is to raise $100,000 from
now until the end of the year!
It's a BIG goal, but we can do it.
Funds will support the
Kleefstra Clinic, research projects,
and our conferences through your
gift. Every amount counts! Every
amount matters!
Opportunities to Give:
THANK YOU for
joining us for Giving Tuesday and
for supporting us on our journey!
We are all #buildingabrighterfuture
for our loved ones impacted by
Kleefstra Syndrome! |
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We have great momentum with plenty
of opportunity to add more
participants in this study!
As a refresher, Lottie Morison (PhD
candidate and speech pathologist)
and Professor Angela Morgan are
researchers from Melbourne,
Australia. Together with families
from the international Kleefstra
Syndrome community, Angela and
Lottie are researching speech and
language in individuals with
Kleefstra Syndrome (KS).
Since June 2022, over 90 families
have expressed interest, with
individuals with KS from less than 1
year old to their mid 30s.
Currently, 60 families from over 15 countries have consented to participate, making this research the largest study of individuals with KS to date!
The team has reported that they are
already learning so much about the
range of communication strengths and
features in individuals with KS.
This information will help us
understand how speech and language
develops, what supports might suit
individuals best, and the
communication similarities and
differences in individuals with KS.
Join in today! The
study is still welcoming
participants
until early
2023. |
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Quick Clips on Kleefstra
-
Neuroscience
Renaissance:
A recent article in Forbes
details why many biotech
investors and scientists are
saying they see significant
promise in the emerging era
of precision neuroscience.
Their optimism is fueled by
new platforms for data
collection, new biomarker
modalities, and new
computational methods.
-
Mecha
Noodle Bar:
We are thrilled to announce
a partnership with
Mecha Noodle Bar
for the month of December!
The restaurant group
launched an initiative,
Eat Justice,
that selects a nonprofit
organization every month to
give to. For every
bowl of ramen sold during
the month from all of their
restaurants, $0.50 will go
to IDefine! We have
set a $15,000 goal!
Please support them, share
this, and ask other
restaurants to participate!
Connect them with us, and we
can take it from there!
-
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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