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| | SR0408 | | LRB100 12355 MST 25096 r |
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1 | | SENATE RESOLUTION
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2 | | WHEREAS, In 2014, medical literature first described the |
3 | | rare condition of PURA syndrome, and
identified the PURA gene |
4 | | on the fifth chromosome as the source of the syndrome; and
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5 | | WHEREAS, PURA syndrome is a very rare condition; it causes |
6 | | a variety of neurological
symptoms from birth, including |
7 | | difficulty breathing, maintaining body temperature, severe |
8 | | sleepiness,
feeding difficulties, and very low muscle tone; and
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9 | | WHEREAS, There are approximately 100 confirmed cases of |
10 | | PURA syndrome globally, though it is
expected that many more |
11 | | people will be diagnosed in the coming years due to the |
12 | | increased use of 'gene
sequencing' technology; PURA syndrome |
13 | | patients range in age from seven months to 29 years; and
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14 | | WHEREAS, Nearly all PURA syndrome patients are non-verbal |
15 | | and have various motor
difficulties, including challenges with |
16 | | walking independently; and
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17 | | WHEREAS, Early intervention is key to aiding children with |
18 | | PURA syndrome; occupational
therapy can assist with spinal |
19 | | development, independence, sensory processing, self-care, and |
20 | | motor
functioning; and
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