Smiles for Miles was established August 2013 in honor of Miles Daniel Brunner, who was diagnosed with Nonketotic Hyperglycinemia shortly after birth. NKH, also known as glycine encephalopathy, is a devastating and debilitating pediatric genetic disease.
The organization was founded by Penny Brunner, Miles’ fraternal grandmother, and Matthew Brunner, Miles’ father.
The U.S. has the highest infant death rate of the top 27 industrialized countries, according to Centers for Disease Control and Prevention. For every 1,000 live births, six babies lose their lives in the first year. Various undetected rare genetic diseases are suspected to contribute to that statistic.
Smiles for Miles is a member of Centre County Council of the Human Services; Local Interagency Community Council Central IU10, which serves Centre, Clearfield and Clinton Counties; the Blair County Health and Welfare Council and the Local Interagency Community Council Appalachian IU8, which serves Bedford, Blair, Huntingdon and Somerset Counties. Our organization advocates the importance of early intervention.
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Last fall, members of Smiles for Miles attended a three day seminar at Boston’s Children’s Hospital, sponsored by NKH Crusaders. Specialists from various fields of medicine presented highly informative programs. It was a great honor to meet Dr. Johan Van Hove, of University of Colorado, the current leading specialist on NKH. We were also honored to have dinner and receive information from Kasturi Haldar, with the University of Notre Dame and Center for Rare and Neglected Diseases. Smiles for Miles hopes to travel to Notre Dame and receive further training to share with others.
The organization has also been working with State Rep. Marcy Toepel to advocate legislation establishing a “rare disease advisory council” in Pennsylvania. This would affect the entire rare disease community.
In 2016, the Smiles for Miles Swing Project was established in cooperation with various organizations, municipalities and parks and recreation groups throughout central Pennsylvania to raise awareness of the need for special needs swings. Through the generous donations received, we have gifted various therapy organizations with special needs swings to be utilized by therapist. Smiles for Miles has been informed how very rewarding it is for the children to get to swing when they have participated in their therapy. Vision therapists have shared that most children with vision issues love the feeling and freedom they experience while swinging.
We have published various children’s books as well as an international cookbook showcasing home-cooked recipes from families all over the world who are or have been affected by a rare pediatric disease such as NKH.
Smiles for Miles will host its fifth annual golf tournament at Toftree’s Country Club in State College on Aug. 12. To sign up your teams or become a sponsor, visit www.smilesformiles.info.
Penny Brunner is the founder of Smiles for Miles. She can be reached at firstname.lastname@example.org.