Awareness Day for A-T Proclamation
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WHEREAS, Ataxia-telangiectasis, or A-T is a progressive, degenerative disease that
normally appears during the second year of life, beginning with a
"wobbly" lack of balance and slurred speech; and
WHEREAS, approximately one child in 40,000 may be born with this disease and it
respects no racial, economic, geographic or educational barriers, with
both males and females equally affected; and
WH EREAS, children born with A- T suffer a progressive degeneration of a portion of
the brain, which leads to lack of muscle control, confining the patient to
a wheelchair and limiting their ability to write, talk, and read; and
WHEREAS, for most children with A-T, a problem with immunodeficiency brings
recurrent respiratory infections, which become life-threatening
pneumonia as they do not respond to typical antibiotic treatments; and
WHEREAS, cancer in its various malignant forms strikes children with A-T almost
1000 times more frequently than the general population, and because of
the various severe health degenerations, most children die by their teens
or early 20's; and
WH EREAS, because A-Tis a rare, "orphan" disease, very little research data is
available; and
WHEREAS, Dubuque is having a walk at Murphy Park on Saturday, September 16,
2000 to raise awareness of this unique, debilitating disease.
NOW THEREFORE, I, TERRANCE M. DUGGAN, MAYOR OF THE CITY OF DUBUQUE DO
HEREBY PROCLAIM SATURDAY, SEPTEMBER 16, 2000 AS:
IIAWARENESS DAY FOR A-T"
IN DUBUQUE, IOWA.
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IN WITNESS THEREOF, I have hereunto
set my hand and caused the Great Seal
of City of Dubuque, IA to be affixed this
5th day of September, 2000.
Terrance M. Duggan, MAYOR
Attest:
Jeanne F. Schneider, City Clerk
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I)ear I\tfayor Duggan.
I spoke ~vvith you briefly this past \-"reek about our s(:-n J (:'leI
and an upcotlling ~valk vve are having at l\'1urph~'vr Park (")n
Saturday. Sept. 16. 2000. As I Inentioned on the phone the
Ccn,'crnor's office has issued a Prochunation luaking the 16th.
c'lf Sep(en1.ber. Stal.e A \varenessDa)' for A-rr (AtaxiH
teJaneiectasla. the rare disease our son has\. I o ,"va IS no'v\
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(he third state in the nalion to tuake such a prochul1aliou.
Enclosed VOll vvill find a brochure about the \-valk :and
."
infornlation about A-'r. "W"hat\-ve \lv'oukf ask ofvou is to be
at the park around 9:45. read the proclan1.utioll and thell ....vall-.
vvith us around the park at 10. 'You could leave after the
\.valk or stav for the food and fun ,"vhichever vou choose. f1
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vvould be greatl=,,' appreciated if you cottJd join us as ","C,lJ"\i
to educ'ate the area about this dreaded disease.
'T'h<'lnk you for consider-ing ourinvi1a1ion <lnd we '~vill 1("Ink
for\.vard 10 hearing 1'1'011'1 )'00.
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A- T Children's Project
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What is Ataxia-Telangiectasia?
A Multi-system Disease...
Ataxia-telangiectasia, or "A-T," is a progressive, degenerative disease that affects a startling
variety of body systems. A-T children appear normal at birth, and the first signs of the disease
usually appear during the second year of life. These first signs are usually a "wobbly" lack of
balance and slurred speech caused by "ataxia", which means a lack of muscle control.
Ataxia...
The onset of this ataxia marks the beginning of progressive degeneration of a part of the brain,
known as the cerebellum, that gradually leads to a general lack of muscle control, and eventually
confines the patient to a wheelchair. Because of the worsening ataxia, children with A- T lose
their ability to write, and speech also becomes slowed and slurred. Even reading eventually
becomes impossible as eye movements become difficult to control.
Telangiectasia...
Soon after the onset of the ataxia, the A- T patient usually shows another clinical hallmark of A-
T: "telangiectases", or tiny red "spider" veins which appear in the comers of the eyes or on the
surface of the ears and cheeks exposed to sunlight. Although these telangiectases are harmless,
their unique appearance together with ataxia is what led to naming this disease "Ataxia
Telangiectasia".
Immune System Problems...
For most (about 70 percent) of children with A- T there is another clinical hallmark:
immunodeficiency that usually brings recurrent respiratory infections. In many patients, these
infections can become life threatening. Because of deficient levels of IgA and 19B
immunoglobulins, the natural infection fighting agents in the blood, A- T children are highly
susceptible to lung infections that do not respond to typical antibiotic treatments. For these A- T
patients, the combination of a weakened immune system and the progressive ataxia can
ultimately lead to pneumonia as a common cause of death.
Predisposition to Cancer...
Children with A- T tend to develop malignancies of the blood system almost 1,000 times more
frequently than the general population. Lymphomas and leukemias are particularly common
types of cancer, although the frequencies of most cancers are elevated. Ironically, another facet
of the disease is an extreme sensitivity to radiation, which means that A- T patients cannot
tolerate the therapeutic radiation usually given to cancer patients.
Other Features of A- T...
http://ww2.med.jhu.eduJataxialwhatisat.htm
6/19/99
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Other features of ataxia-telangiectasia that may affect some children are: mild diabetes mellitus,
premature graying of the hair, difficulty swallowing causing choking and/or drooling and slowed
growth. Even though A-Tis a milIti-system disorder, the children afilicted have and maintain
normal or even above-normal intelligence. Their dispositions seem to remain equable and help
them to maintain a healthy outlook on life despite the progression of their disabilities.
How Frequent is A- T?
Ataxia-telangiectasia respects no racial, economic, geographic or education barriers. Both males
and females are equally affected. Epidemiologists estimate the frequency of A- T as 1 in 40,000
births. But it is believed that many A- T children, particularly those who die at a young age, are
never properly diagnosed. Therefore, this disease may actually be much more common.
The Prognosis...
A- T is presently incurable and unrelenting. If they are lucky enough not to develop cancer, most
A- T children are dependent on wheelchairs by the age of ten, not because their muscles are too
weak, but because they cannot control them. Later, A- T patients usually die from respiratory
failure or cancer by their teens or early twenties. A few A- T patients live into their fourties, but
they are extremely rare.
What treatments are available?
There is no cure for A-T, and there is currently no way to slow the progression of the disease.
At this time, treatments are directed only toward partially alleviating some symptoms as they
appear. Because A-T is a rare, "orphan" disease, very little research data is available on
pharmaceutical therapies that may aid these children. Physical, occupational and speech therapy
are used to help maintain flexibility, gamma-globulin injections help supplement the immune
systems of A- T patients, and high-dose vitamin regimes are being undertaken with some
moderate results.
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{Copyright 1997 by the Ataxia-Telangiectasia Children's Project
http://ww2.med.jhu.edu/ataxialwhatisat.htm
6/19/99
" 't
Other feat~re~ of ~taxia-telangiectasia that may affect some children are: mild dia?etes mellitus') '.
premature graying of the hair, diffi~ulty swan~wing ,;ausing ,choking ~ndlor dl'oolmg an? sl?wed
growth. Even though A-Tis a mfiltl-system disorder, the children afflicted ?ave and mamtaln
normal or even above-normal intelligence. Their dispositions seem to remam equable and help
them to maintain a healthy outlook on life despite the progression of their disabilities.
How Frequent is A- T?
Ataxia-telangiectasia respects no racial) economic, geographic or education barriers. Both mates
and females are equally affected. Epidemiologists estimate the frequency of A-T as 1 in 40,000
births. But it is believed that many A- T children, pal ticularly those who die at a young age, are
never properly diagnosed. Therefore, this disease may actually be much more common.
The Prognosis...
A- T is presently incurable and unrelenting. If they are lucky enough not to develop cancer, most
A-T children are dependent on wheelchairs by the age often, Jlot because their muscles arc too
weak, but because they cannot control them. Later, A- T patients usually die from respiratory
failure or cancer by their teens or early twenties. A few A- T patients live into their fourties, but
they are extremely rare.
What treatments are available?
There is no cure for A-T, and there is currently no way to slow the progression of the disease.
At this time) treatments are directed only toward partially alleviating some symptoms as they
appear. Because A-Tis a rare, "orphan" disease, velY little research data is available on
pharmaceutical therapies that may aid these children. Physical, occupational and speech therapy
are used to help maintain flexibility, gamma-globulin injections help supplement the immune
systems of A- T patients, and high-dose vitamin regimes are being undertaken with some
moderate results.
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{'Copyright 1997 by the Ataxia-Telangiectasia Children's Project
http://ww2.med.jhu.edu/ataxia/whatisat.htm
6/19/99