Full Text of SR0408 100th General Assembly
SR0408 100TH GENERAL ASSEMBLY |
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| 1 | | SENATE RESOLUTION
| 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
| 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
| 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
| 14 | | WHEREAS, Nearly all PURA syndrome patients are non-verbal | 15 | | and have various motor
difficulties, including challenges with | 16 | | walking independently; and
| 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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| 1 | | WHEREAS, The PURA Syndrome Foundation is a global | 2 | | organization that provides support,
education, and community | 3 | | for PURA families, helping to fund research for families coping | 4 | | with the
effects of PURA syndrome to enhance the quality of | 5 | | life for patients and their families; therefore, be it
| 6 | | RESOLVED, BY THE SENATE OF THE ONE HUNDREDTH GENERAL | 7 | | ASSEMBLY OF THE STATE OF ILLINOIS, that we declare April 28, | 8 | | 2017 as PURA Syndrome Day; and be it further
| 9 | | RESOLVED, That a suitable copy of this resolution be | 10 | | presented to the PURA Syndrome
Foundation Team Chicago in | 11 | | recognition and appreciation of the organization's important | 12 | | work.
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