Bill Text: IL HR0965 | 2015-2016 | 99th General Assembly | Introduced

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Bill Title: Designates February 29, 2016 as "Rare Disease Day" in the State of Illinois. Recognizes the courage of Miss Grace Herschelman and others like her as they battle rare diseases and gives the House's wholehearted support for a State, national, and global commitment to improving access to and developing new treatments, diagnostics, and cures for rare diseases and disorders.

Sponsorship: Slight Partisan Bill (Republican 2-1)

Status: (Passed) 2016-03-02 - Added Co-Sponsor Rep. Grant Wehrli [HR0965 Detail]

Download: Illinois-2015-HR0965-Introduced.html

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HR0965 LRB099 18513 GRL 42892 r
HOUSE RESOLUTION
WHEREAS, Rare diseases affect almost 30 million Americans;
in the United States, children with rare genetic diseases
account for more than half of the population affected by rare
diseases; and
WHEREAS, Individuals with rare diseases experience
challenges that include difficulty in obtaining an accurate
diagnosis, limited treatment options, and difficulty finding
physicians or treatment centers with expertise in their
disease; and
WHEREAS, The National Organization for Rare Disorders is an
organization established in 1983 to provide services to and
advocate on behalf of patients with rare diseases; the
organization was a primary force behind the enactment of the
Orphan Drug Act and remains a critical public voice for people
with rare diseases; and
WHEREAS, The National Organization for Rare Disorders
sponsors Rare Disease Day to increase public awareness of rare
diseases; Rare Disease Day has become a global event occurring
annually on the last day of February, providing hope and
information for rare disease patients around the world; and

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WHEREAS, Residents of Illinois are greatly affected by rare
diseases like Infantile Neuroaxonal Dystrophy, an extremely
rare genetic disorder that affects the nervous system and
causes a breakdown of the nerves throughout the body; and
WHEREAS, Infantile Neuroaxonal Dystrophy causes children
to unlearn skills like walking and talking and, in some cases,
affects their vision; most children diagnosed with Infantile
Neuroaxonal Dystrophy do not live to see their tenth birthday;
and
WHEREAS, Infantile Neuroaxonal Dystrophy affects about 30
children around the world, including Illinois resident Grace
Louise Herschelman, the daughter of Kyle and Mary Herschelman
of Hillsboro; and
WHEREAS, Grace Herschelman attends Hillsboro United
Methodist Church's preschool program 3 mornings a week; she
loves music, reading books, spending time with her friends, and
Minnie Mouse; and
WHEREAS, Grace Herschelman had the opportunity to go on a
trip to Auluani, Hawaii, which was provided by the Make-A-Wish
Foundation, to meet Minnie Mouse; and
WHEREAS, Grace's family has made her story known through

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their blog called A Grace Filled Journey, which allows Grace to
touch the lives of individuals all over the world; the
community has become engaged in supporting research for
Infantile Neuroaxonal Dystrophy by supporting events such as
the Grace Filled Journey 5K and a one-mile run/walk event in
Hillsboro; and
WHEREAS, These events have provided Grace Herschelman and
her family the opportunity to raise over $70,000 to help fund a
study for treatment options, as there are currently no
treatments or cure for those affected with Infantile
Neuroaxonal Dystrophy; and
WHEREAS, Infantile Neuroaxonal Dystrophy families around
the world have raised more than $450,000 for 2 INAD studies and
fundraising efforts and continue to help children like Grace
Herschelman; therefore, be it
RESOLVED, BY THE HOUSE OF REPRESENTATIVES OF THE
NINETY-NINTH GENERAL ASSEMBLY OF THE STATE OF ILLINOIS, that we
join in the global observance of Rare Disease Day by
designating February 29, 2016 as "Rare Disease Day" in the
State of Illinois; and be it further
RESOLVED, That we recognize the courage of Miss Grace
Herschelman and others like her as they battle rare diseases

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and give our wholehearted support for a State, national, and
global commitment to improving access to and developing new
treatments, diagnostics, and cures for rare diseases and
disorders; and be it further
RESOLVED, That a suitable copy of this resolution be
presented to Grace Herschelman as an expression of our deepest
admiration and respect for her and her parents' continued
efforts to raise awareness for Infantile Neuroaxonal
Dystrophy.