Living Columns & Blogs

Smiles for Miles advocates for additional testing for newborns

Penny Brunner

Smiles for Miles Foundation was founded in honor of our grandson, Miles Daniel Brunner, born Oct. 31, 2012. Days after birth, Miles was diagnosed with a rare disease, nonketotic hyperglycinemia.

Smiles for Miles Foundation is a member of Blair County Health & Human Services, ARC of Blair County and Centre County Council of Human Services. We attend various health events throughout the area, always working diligently to raise awareness of the fact that the United States has the highest infant death rate of the top 26 industrialized countries in the world. For every 1,000 live births, six babies die in the first year of life, according to the Centers for Disease Control and Prevention. While infant death is a very painful topic, we must raise awareness.

Our organization has grown exponentially. We now provide advocacy for families throughout our state who are battling rare pediatric genetic diseases.

Rep. Thomas Murt, R-Montgomery, and co-sponsors have introduced House Bill 498 to amend the Pennsylvania Newborn Screening Act of 1965 to add NKH to the listing of diseases offered for testing on newborns. The newborn screening is not a cure. It assists health care providers in determining whether treatment or other services are necessary to avert mental disabilities, permanent physical disabilities or death. House Bill 498 passed through the House of Representatives in May and is now in the Senate Health Committee. We are very positive that this vital legislation will pass the Senate and go next to the governor for final signature.

Smiles for Miles Foundation is also working as an advocate to establish a Rare Disease Advisory Council for Pennsylvania. Various other states such as North Carolina, Rhode Island and Massachusetts have already passed this legislation. The purpose of such a council in our state would be to coordinate statewide efforts to serve the residents affected by rare diseases and advise the governor and legislators of the services needed to assist and improve the lives of these families. Rep. Marcy Topel is in the process of writing proposed legislation.

Smiles for Miles Foundation will host its 2016 Golf Tournament on Aug. 20 at the Toftrees Golf Resort. Contact Matthew Brunner at Mbrunpsu@gmail.com to join us.

If you or your organization would like to join these vital and lifesaving missions, please visit www.smilesformiles.info.

Penny Brunner is the founder of Smiles for Miles. She can be reached at smilesformiles1031@gmail.com.

  Comments