Few things that you can share with a legislator are as powerful as a personal story. Unfortunately, it is easy to dismiss pages of facts and statistics as something that will never happen to me or someone I love. However, when a person shares their personal experiences of ALS, or caring for someone with ALS, the story takes on a new meaning. As a person who has experienced the disease, or caring for someone with it, you become the single irrefutable point that draws a person towards your side. A living breathing person makes you want to feel empathy and i tstays with you as you go throughout the day. The visual observations of someone struggling to breathe or make out the words to ask the legislator's support for ALS funding are not dismissed as easily as a fact sheet that ends up in the recycle bin. A personal experience conveys feelings and emotions that are not replicated in any other form of lobbying.
As a legislator who lobbies for ALS research and respite care money, I am in the middle of my third term. Every year I share my story on ALS Advocacy Day to the other members of the House because I know the power behind personal experiences. My advocacy for ALS really began when I was 15 years old. My 13 year old sister and I were faced with the harsh realities of a mother who was diagnosed with ALS in February of 1991. The following year, my father was also diagnosed with ALS. At the time, they were one of only eight couples in the history of the country to both have the disease.
It was an amazingly trying time for my sister and me. However, with the help of our family, friends, local charitable organizations and our church, we were able to care for my father at home until he passed. My mother, even though she was diagnosed first, lived almost 8 years with ALS and the majority of that time she also lived at ho me. I performed many of the normal household chores while my sister cared for our mother. I do not just believe that providing care at home is the better treatment option, I know it because I have lived through it. It is better for the patient and it is also more cost effective.
Many people now ask me why I continue to advocate for ALS funding even though it will not directly benefit my parents. I want to honor their memory. I share my story so that others will hopefully not have a story of their own to share in the future. A personal story is a powerful way to lobby and persuade a legislator.
I have shared my story, will you join me?
As a patient with ALS, attending advocacy days in Washington, DC is important to my wife Charlotte and me on many levels.
There is a day of seminars and meetings to learn about important issues that affect all ALS patients and their families. Many of us are particularly interested to find out about the exciting advances in research. Last year we listened to a panel of experts from all over the world discuss recent research and answer questions from the audience. There is a meeting for first time attendees so that they can learn what to expect when they have their meetings on Capitol Hill. Breakout sessions are also held on other subjects of interest.
Last year we also had a chance to help research by volunteering to give blood for DNA testing. On Tuesday we get the opportunity to meet with our elected officials and their staffs. We discuss ways to support the fight against ALS. All of the patients and caregivers break down into small groups with a member of the ALS Association and meet with our local congressmen and senators. We share how ALS has affected our lives and ask them to support pending legislation to help our cause.
There is time to get to know and to socialize with other members in the ALS community. Last year we had a group dinner at the hotel, a candlelight vigil, and an ice cream social. These events are well attended by patients, family members, and those who work for the ALS Association. Spending a day moving between the offices on Capitol Hill is an excellent way to get to know more people involved with the fight against ALS. It is good to know that we are not alone and there are so many people working every day in the effort to find a cure and to treat ALS patients.
You can also find time to explore Washington, DC. There are many sites to see and Washington is beautiful in early May.
Charlotte and I plan to be at advocacy days this year and every year. We hope that more patients will be able to attend. We look forward to seeing you there.
One of the frustrating things about being diagnosed with ALS is the feeling that there's nothing that can be done about it. However, I've found that participating in advocacy can be a way to do something about a situation that nothing can be done about. Through state and national advocacy efforts, I've been able to make a tangible difference in the fight against ALS. By taking the ALS message in person to both state and federal legislators, we have been able to increase our legislators' awareness about ALS.
Indeed, our message has not fallen on deaf ears: we've been able to secure funds from the Pennsylvania state legislature for both the Greater Philadelphia and Western Pennsylvania chapters of the ALS Association. In addition, our efforts have resulted in the passage of federal legislature to fund the National ALS Registry. So for me, participating in advocacy efforts has definitely allowed me to expand my fight against ALS.