by Barbara Swoyer Several months ago, my son turned 22. I felt grateful, lucky and blessed. I also felt apprehensive and overwhelmed. Like many other parents of children with special needs, it was a day that I dreaded, the day when my child would lose the entitlement of school and related services. Reaching this milestone meant that he was continuing to beat the odds against a progressive disease and the prognosis of a limited life […]
A majority of states are not measuring up on legislative solutions that reduce the burden of rare diseases affecting 30 million Americans, according to a new report released today by the National Organization for Rare Disorders Rare Action Network™ (NORD RAN). The 2018 “State Report Card” indicates that progress in several areas of health policy is slow. “The numbers are astonishing,” said Peter L. Saltonstall, president and CEO of NORD. “The latest State Report Card […]
by Colleen Berlingieri I first met Rachael at a bowling alley. She is a support worker for people with disabilities and she was there with a client. At the time, I was looking for someone to work with my son and Rachael was highly recommended. Acquaintances told me that she was a safe driver, filled out paperwork on time and was very engaged with her clients. She sounded perfect, so I walked over to meet her. I waited […]
By Ann Allen “Find a group of people who challenge and inspire you, spend a lot of time with them, and it will change your life.” ~Amy Poehler Ah, you made it through the holidays. Now what? Did you make a New Year’s resolution? Did it sound something like mine and contain words like healthy eating, exercise, less stress? I know. We try. We’re busy. Our people come first. I am not a personal trainer, motivational […]
by Ann Allen ~The everyday kindness of the back roads, more than makes up for the agony of the headlines By Charles Kuralt Life is beautiful. Ah, such a cliché, but sometimes it feels like that when people are put in your life at the right time, in the right place, and wearing running shoes. This is the story of how my family joined the running community. On Sunday, April 14, 2013, a woman approached […]
