HR0965 99TH GENERAL ASSEMBLY

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

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 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 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.