Bill Text: IL SR0408 | 2017-2018 | 100th General Assembly | Introduced

Bill Title: Declares April 28, 2017 as PURA Syndrome Day.

Spectrum: Partisan Bill (Democrat 1-0)

Status: (Passed) 2017-04-26 - Resolution Adopted [SR0408 Detail]

Download: Illinois-2017-SR0408-Introduced.html

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

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1 WHEREAS, The PURA Syndrome Foundation is a global
2organization that provides support, education, and community
3for PURA families, helping to fund research for families coping
4with the effects of PURA syndrome to enhance the quality of
5life for patients and their families; therefore, be it
7ASSEMBLY OF THE STATE OF ILLINOIS, that we declare April 28,
82017 as PURA Syndrome Day; and be it further
9 RESOLVED, That a suitable copy of this resolution be
10presented to the PURA Syndrome Foundation Team Chicago in
11recognition and appreciation of the organization's important