BENEFITING: AUTISM SPEAKS
EVENT DATE: May 04, 2014
Juli Schneider and Mike Metzger are in-laws who were originally legally united together by Mike's marriage to Lara Metzger (Juli's sister) in 1994. On September 11, 2011, along with Lara, they ran their first race at the Chicago Half-Marathon. This race was chosen to honor one of Lara's closest friends whom she met while at college at Northwestern, Melissa Doi, who died exactly 10 years earlier on September 11, 2001, shortly after arriving to work at the World Trade Center.
We have always intended to progress to the full marathon, but various insurmountable obstacles got in the way (cakes, ice cream, pizza, burgers, and our butts on our respective couches). But, in the summer of 2013, while Lara and family were visiting Juli and family in Charleston, we (Juli and Mike) revisited our prior goal, and made the commitment to run our first whole marathon in 2014.
We decided that instead of just running a marathon in order to be able to check off "marathon" on our personal lifetime bucket lists, we wanted to honor (this time by fundraising) two special kids- Grace Bell and Dilibe Iwegbue. Grace is the daughter of one of Mike and Lara's closest friends, and Dilibe is the son of one of Juli's beloved former co-workers. Several years ago, Grace was diagnosed with Asperger's Syndrome and Dilibe with Autism. We have both witnessed our friends struggle with the pain and shock at time of diagnosis, and then over the years lovingly and gracefully incorporate their child's diagnosis into their everyday life.
Dilibe's mom and dad, Florence and Kwame Iwegbue, developed the "Livewello" app, in order to organize the abundance of information regarding Dilibe's health into one place, accessible from anywhere. Their mission, as written on their website https://livewello.com: "In order to care for our son and promote his wellbeing, we needed a tool to organize his health data and facilitate the sharing of information with his health care providers and loved ones. We also needed a means and structure to help us take charge of our son's health. LiveWello™ has empowered us to navigate the overwhelming flow of information associated with his care. This has resulted in improvements to his heath care and wellbeing and saved us time and money while reducing our level of stress."
Grace's parents, Allison and Geoff Bell, have shown acute strength and determination over the years in making sure Grace is given every opportunity available to her, especially in the public school system. It has been a journey of years to battle for the services Grace needs to have a successful experience in school. IEPs (Individualized Education Programs) develop over time and the Bell family continues to make sure that their beautiful and supremely intelligent girl is given every opportunity to succeed. This is a labor of love that many families with autistic children continually struggle with. Allison and Geoff's determination and love is evidenced in the daily challenges they have faced since Grace's diagnosis and will continue to face in the future. Along with Grace's younger sister, Evelyn, their family moves forward together to raise awareness of Grace's needs and successes.
Only days ago, on March 27th, 2014, the CDC released new information about the prevalence of Autism Spectrum Disorder (ASD) in the U.S. The data indicates that 1 in 68 children have ASD: 1 in 42 boys and 1 in 189 girls. This is a dramatic increase compared to CDC statistics from 2000, when the numbers were 1 in 166 children.
Autism Speaks in the world's leading autism research and advocacy organization, founded in 2005 by the grandparents of a child with autism. Since then, it has raised over $200 million dedicated to the mission of research into earlier diagnosis of and the treatment of ASD, raising awareness of ASD, and promoting programs and legislation that addresses the unique resource needs of children and families affected by ASD. There is still so much that needs to be done in order to provide the best opportunities for children with ASD to grow and flourish into adulthood.
World Autism Day is April 2nd, and kicks off Autism Awareness Month. Mike and Juli invite you to visit the website for Autism Speaks, www.autismspeaks.org, to learn more about it, and to consider supporting this wonderful organization through a donation in honor of Grace and Dilibe.
On May 4th, in Cincinatti, Juli and Mike will do the rest.