NOTE: On June 19-20, the Children's Hospital Association will be holding our ninth annual Family Advocacy Day in Washington, DC. Leading up to the event, we'll be posting stories by the amazing moms and dads of some of our attending children. Today's story comes from Terri Healey, who attended Family Advocacy Day with her daughter, Leanna, last year.
Last year my daughter, Leanna, her Dad, and myself, were asked to attend FAD12 to represent Boston Children's Hospital. I have been thinking about the families participating this year and especially so last week, when I was watching a tribute on TV to the late Massachusetts Governor Paul Cellucci.
The Governor died at 65 of ALS (Lou Gehrig's Disease). Governor Cellucci did many wonderful things in his life. Even during his last two years of his illness he raised more than two million dollars and was an advocate for research for ALS.
There were many eloquent speeches given about Gov. Cellucci. But one speaker's words really hit home. This speaker was Dr. Michael Collins, Chancellor of The University of Massachusetts medical schools. In his speech he said "He (Cellucci) was aware that government funding of medical research was not keeping pace with inflation. He was worried that cures were being delayed because diminished research funding could not keep stride with the intellect and innovation of those who conducted it." He added, "There isn't one of us who wants to have to face the prospects of a very difficult and challenging disease. There isn't one of us who wants to believe that our nation cannot invest in research so that we can actually find a cure for diseases like ALS."
These words made me think of the importance of Family Advocacy Day.
Last year, Katie Beckett's mother Julie came to speak to the family advocates about the Katie Beckett Waiver. Mrs. Beckett came to speak to us even though her daughter had just died about two months before the conference. She wanted us to know the importance of what we were here to do in D.C. Because of her advocacy, President Reagan signed the law creating the Katie Beckett Waiver so that all disabled children could receive Medicaid support.
During these difficult economic times with rancorous partisan debate over healthcare, what each of you is doing is so important. As we saw with Mrs. Beckett, one voice can make a huge difference. You are a voice for many. Think of Mrs. Beckett, Governor Cellucci, and all the past participants of previous Family Advocacy Days as you embark on this important journey. Our family wishes you good luck with your meetings.
Attending Family Advocacy Day was life changing and empowering for Leanna and our family. I know it will be for yours.