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Dandy
Kids Documentary
Dandy Kids is a documentary about families who share their
life experiences of looking for answers from a limited
number within the medical community. Over and over again
families struggle to find answers for a diagnosis for which
the cause and treatment are not known. Many are told
pregnancies should be terminated, and that the prognosis is
hopeless. Dandy Kids will depict the experts, advocates, and
ultimately the Heroes who by way of faith, perseverance, and
unconditional love live life to the fullest every day! Many
times this is done minute by minute, second by second, and
in the research labs chromosome by chromosome. This
documentary is being made in conjunction with Congress,
Researchers and those families effected by the various types
of Dandy Walker malformations, to promote research and raise
awareness, and give HOPE! |
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One boy's Aunt
connects with families around the world in search of of what it
means to live with the many faces of Dandy Walker Syndrome, and how
she can help those receiving a diagnosis to look for answers.
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"Dandy
Kids"
Award Winning documentary successfully screened for Congress at
the US Capitol.
Washington DC— “Dandy Kids” screened before members of Congress,
Congressional staffers, Children’s Advocates, and medical
professionals top in their field. “It was a little intimidating at
first just walking up to the US Capitol and realizing the magnitude
of what we were doing. Not knowing who would be in the audience, but
at the same time understanding that they were taking notice of what
we are fighting for”, said Rae.” Families who are in this battle
with their loving children affected by Dandy Walker Syndrome
traveled for hours just to be present and to show their support of
“Dandy Kids Documentary” and H Con Res 163, which currently has 83
bipartisan Co sponsors. H Con Res is the result of Dandy Walker
Alliance founder Eric Cole, and his diligent efforts to push for
legislation. Eric and his wife Andrea attended the screening along
with families from Maryland, Pennsylvania, North Carolina, Colorado,
and Alabama. The evening was attended by many physicians, including
Commander of the 79th Medical Group at Andrews AFB, Colonel Robert
Miller. “This documentary was exceptional in educating people about
Dandy Walker. As a Developmental Pediatrician, I cannot think of a
better way to better appreciate the challenges families of children
with rare diagnosis have to endure. If this documentary helps one
child with a rare syndrome or diagnosis, then it was well worth the
effort. I have no doubt that this will be the case for this syndrome
thanks to “Dandy Kids”, said Colonel Miller.
Also on hand to perform her poignant song, “Songbird” which was
written for “Dandy Kids” was none other than Nashville recording
artist Laura Dodd, accompanied by Tom Walker on the guitar.
“Dandy Kids” is a documentary which features children with
Dandy-Walker Syndrome (DWS) and their parents, doctors, nurses,
researchers, and members of the US Congress who are advocating for
both an increase in awareness and funding from the National
Institute of Health. DWS is a brain defect that causes a multitude
of other anomalies. Children with DWS can have hydrocephalus, spina
bifida, deafness, and heart and kidney problems to name a few.
During the Q&A following the screening Rae and various medical
professionals answered many questions in attendance. It was obvious
by the questions that many are searching and seeking for answers.
“They need help that we as filmmakers can’t give, but Congress can.
That is why we already have signed up 25 families affected by DWS
for our family conference, which will be held April 23, 24, 25th,
2009 in Denver Colorado”, said Rae. The conference is for families
affected by DWS and medical professionals, and researchers working
to make advances in medicine surrounding the diagnosis, both that
can educate each other.
It is Rae’s desire to have the awareness of DWS elevated to an
awareness level to that of Autism or juvenile diabetes. For
additional information or to view the trailer please visit
www.dandykidsdocumentary.com . For more information you may also
visit www.dandy-walker.org.
Chris, Emilie, Nicolas and Maddie with Dandy Kids
Director Darla Rae
Congresswoman Heather Wilson and Darla Rae at Mind
Institute in NM
Darla Rae and Colonel Robert discuss Dandy Kids
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The Dandy Walker Alliance Hits
Maryland Senate Floor on Feb 29th!
The Dandy Walker Alliance hearing is scheduled with the Maryland
Senate at 1PM on Feb 29. regarding declaring the month of May as for
Dandy Walker Syndrome and Hydrocephalus awareness Month. If your in
the Maryland area please show your support by attending this
hearing!
This could very well be the start of a national awareness month. |
Hi My Friends,
You all know the project which I have been working on called Dandy
Kids. I would like to ask your help because we currently have 52
members of congress sponsoring the bill to help raise awareness but
we still have no Colorado reps signed. The lobbyist that we are
working with put this together. We are getting closer. There are
some Colorado reps who are very valuable to this cause because they
sit on the health subcommittee.
I know Diana DeGette is a big one and her DC number is 202-225-4431
and Tom Tancredo's DC number is 202-225-7882
I would greatly appreciate your help with this cause.
You can send this to any and all family members across the country,
because this is a nationwide issue.
Here is a script for calling Colorado reps and asking them to
support H
Con Res 163 Dandy Walker Syndrome.
Please call your reps and ask them to support our efforts.
Just read the script it will walk you through as what to say.
Click here
- Darla
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Eric and Ryan Cole along with Congresswoman
Heather Wilson
who initiated the Congressional Resolution 163 Dandy Walker
Syndrome. |
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