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21st Century Cures Initiative Moves
Ahead |
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Important Bill Approved by
Congress! |
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NTSAD and the rare
disease community is excited to see the House
approve the 21st Century Cures Act with a
strong, bipartisan vote of 344 to
77.
This landmark
legislation includes policy
proposals that could accelerate the pace of
discovery, development, and delivery of rare
disease treatments and cures, as well as provide
hope for patients and their families. In fact,
this legislation could
potentially allow companies to do
much smaller and less expensive trials for
diseases like ours - and therefore it would open
up research on our diseases that they might not
otherwise have considered.
The rare disease
community encourages the Senate to move quickly
in advancing this legislation through the
chamber and to the president's desk. Watch NTSAD
news for developments.
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Medicare, Medicaid &
the
Americans with Disabilities
Act |
 Fifty years
ago Medicare and Medicaid were created. Since
then over 55 million people are on Medicare and
nearly 30 million children are covered by
Medicaid and the Children's Health Insurance
Program (CHIP).
On July 26, 1990 the American Disabilities
Act was signed. Many of NTSAD families have
benefited, and been frustrated, by these
programs that have brought the struggles of
dealing with disabilities closer to the
forefront of all our consciousness. While there
is still more work to be done, these milestones
are worth recognizing.
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| A Family's Stay on the
Cape |
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A Summer Wish Granted to
Annabel |
Many
of NTSAD's families create "bucket lists" for
their children and the whole family as way to
capture as many moments as they can while they
can. The Make-a-Wish organization often plays a
role in how families check off items on those
lists.
One
of NTSAD's families was granted a wish this
summer for their daughter, Annabel, who has
Tay-Sachs. They spent a week on Cape Cod
savoring moments in the sun, by the ocean and
pool, eating traditional Cape Cod fare and just
being together.
They also had the
opportunity to visit with another family touched
by Tay-Sachs who drove down from New Hampshire
to share a few moments with Annabel and her
family. As Annabel's mom, Casey, said at one
point, "No one snuggles quite like another TS
mommy."
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NTSAD's Fifth Annual Day of
Hope |
| A Day to Rally and
Raise Funds for
Research! |
 The season is
upon us to organize lemonade stands, walks,
bake
sales and poker runs all in the name of
research. On September 19th,
2015, NTSAD, its families, their
friends and community worldwide will observe the
Fifth Annual Day of Hope. Events are being
planned leading up to this day.
Stay
tuned to this page on
the NTSAD website to see if an event is
happening near you or to support hope in
general.
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Upcoming
Events
September
12th
Pearl
River, New York
Rockett,
Texas
16th
Annual Eagle for Emily Golf Outing
Indianapolis,
Indiana
September
19th
Bay
City, Michigan
Fremont,
Ohio
October
20th
Seventh
Annual 'Fore' Jack Memorial Golf Outing
Meadow
Brook Club
Jericho,
New York
November
5th
Cambridge,
Massachusetts
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at the Royal Sonesta Hotel in
Cambridge, Massachusetts to honor Robert
Coughlin, President and CEO of Massachusetts
Biotechnology Council (MassBio).
Contact Joan Lawrence at joan@ntsad.org or
(617) 277-4463 for sponsorship and ad
opportunities. |
NTSAD
T-Shirts Available to Order Next
Week
$15 plus
shipping Sizes in limited
quantity.
Men's Crew L, XL
Women's Crew* M
Women's V-neck* L,
XL
Youth
S
*Women's sizes run
smaller |
NTSAD's
partner in screening and awareness, The Jewish Genetic
Disease Consortium (JGDC) is undertaking an
important new project. It has come to our
attention that Kaiser Permanente (California's
largest health insurer) has an inadequate
carrier screening policy for the Jewish genetic
diseases. Currently, screening is only
offered to patients if both partners within a
couple are Jewish. The couple will then be
offered screening for only four (4)
diseases (Cystic Fibrosis, Tay-Sachs, Canavan
and Familial Dysautonmia). Sadly, as we all
know, carriers are going undetected and children
are born with these devastating diseases.
The JGDC plans to set up a meeting with
Kaiser Permanente to present a heartfelt program
detailing the reasons why their screening policy
needs to change.
Please contact
Shari
Ungerleider at her email here
if you are or were a Kaiser patient who was not
offered screening or if inadequate screening was
offered.
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