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1
HOUSE RESOLUTION

 
2    WHEREAS, Rare diseases affect almost 30 million Americans;
3in the United States, children with rare genetic diseases
4account for more than half of the population affected by rare
5diseases; and
 
6    WHEREAS, Individuals with rare diseases experience
7challenges that include difficulty in obtaining an accurate
8diagnosis, limited treatment options, and difficulty finding
9physicians or treatment centers with expertise in their
10disease; and
 
11    WHEREAS, The National Organization for Rare Disorders is an
12organization established in 1983 to provide services to and
13advocate on behalf of patients with rare diseases; the
14organization was a primary force behind the enactment of the
15Orphan Drug Act and remains a critical public voice for people
16with rare diseases; and
 
17    WHEREAS, The National Organization for Rare Disorders
18sponsors Rare Disease Day to increase public awareness of rare
19diseases; Rare Disease Day has become a global event occurring
20annually on the last day of February, providing hope and
21information for rare disease patients around the world; and
 

 

 

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1    WHEREAS, Residents of Illinois are greatly affected by rare
2diseases like Infantile Neuroaxonal Dystrophy, an extremely
3rare genetic disorder that affects the nervous system and
4causes a breakdown of the nerves throughout the body; and
 
5    WHEREAS, Infantile Neuroaxonal Dystrophy causes children
6to unlearn skills like walking and talking and, in some cases,
7affects their vision; most children diagnosed with Infantile
8Neuroaxonal Dystrophy do not live to see their tenth birthday;
9and
 
10    WHEREAS, Infantile Neuroaxonal Dystrophy affects about 30
11children around the world, including Illinois resident Grace
12Louise Herschelman, the daughter of Kyle and Mary Herschelman
13of Hillsboro; and
 
14    WHEREAS, Grace Herschelman attends Hillsboro United
15Methodist Church's preschool program 3 mornings a week; she
16loves music, reading books, spending time with her friends, and
17Minnie Mouse; and
 
18    WHEREAS, Grace Herschelman had the opportunity to go on a
19trip to Auluani, Hawaii, which was provided by the Make-A-Wish
20Foundation, to meet Minnie Mouse; and
 
21    WHEREAS, Grace's family has made her story known through

 

 

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1their blog called A Grace Filled Journey, which allows Grace to
2touch the lives of individuals all over the world; the
3community has become engaged in supporting research for
4Infantile Neuroaxonal Dystrophy by supporting events such as
5the Grace Filled Journey 5K and a one-mile run/walk event in
6Hillsboro; and
 
7    WHEREAS, These events have provided Grace Herschelman and
8her family the opportunity to raise over $70,000 to help fund a
9study for treatment options, as there are currently no
10treatments or cure for those affected with Infantile
11Neuroaxonal Dystrophy; and
 
12    WHEREAS, Infantile Neuroaxonal Dystrophy families around
13the world have raised more than $450,000 for 2 INAD studies and
14fundraising efforts and continue to help children like Grace
15Herschelman; therefore, be it
 
16    RESOLVED, BY THE HOUSE OF REPRESENTATIVES OF THE
17NINETY-NINTH GENERAL ASSEMBLY OF THE STATE OF ILLINOIS, that we
18join in the global observance of Rare Disease Day by
19designating February 29, 2016 as "Rare Disease Day" in the
20State of Illinois; and be it further
 
21    RESOLVED, That we recognize the courage of Miss Grace
22Herschelman and others like her as they battle rare diseases

 

 

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1and give our wholehearted support for a State, national, and
2global commitment to improving access to and developing new
3treatments, diagnostics, and cures for rare diseases and
4disorders; and be it further
 
5    RESOLVED, That a suitable copy of this resolution be
6presented to Grace Herschelman as an expression of our deepest
7admiration and respect for her and her parents' continued
8efforts to raise awareness for Infantile Neuroaxonal
9Dystrophy.