Janet Palkewick is defying the odds, living with ALS for nearly 27 years. She was diagnosed in 1989 while pregnant with her fourth child. When she hit the 20 year mark, she decided it was time to join the larger fight to end ALS.
“I realized I was still living for a purpose. I decided it was time to get more involved with finding a cure,” Janet said.
Which is why Janet decided to become an ALS advocate. She will be heading to Capitol Hill with The ALS Association for the 8th time this May for our Public Policy and Advocacy Conference along with her children and grandchildren. This important conference includes a day of lobbying elected officials on Capitol Hill.
“Having 7 years of experience, I’m very comfortable speaking about ALS and asking for the needed funding. Is it worth the time, expense, being drained both physically and emotionally? A great big YES,” Janet said. “I feel accomplished, I was heard. I made a difference.”
Janet admits sharing her story with lawmakers can be difficult but says the lawmakers have always been receptive.
“I have never had a bad meeting. The lawmakers or their aides have listened with genuine interest and concern. It is very important for lawmakers to understand that ALS does in fact affect the whole family. We need to show the personal side of ALS, put a face on the disease. Sometimes it gets very emotional; there are lots of tears. But that’s okay, it’s making ALS real,” Janet said.
Staying motivated and positive isn’t always easy, but Janet says the progress she has seen since her diagnosis keeps her motivated.
“More has been accomplished toward finding an ALS cure in the last 10 years than the previous 70 years. Actually, since my diagnosis 27 years ago, the most headway has been made in the last 5 years. I am hopeful! I must remain hopeful that there will be a cure in my lifetime,” Janet said.
One of the bills our advocates will be talking to lawmakers about in May, would eliminate the 5 month waiting period for disability insurance for people diagnosed with ALS. Janet says it’s important for everyone to speak up on this issue, even if you are not directly affected by ALS.
“When there is an issue to be addressed, I not only send my letter, I also ask others to do likewise. Advocacy is not limited to PALS and family, anyone can be an ALS Advocate. I am a firm believer in fundraising and advocating all year long. After all, PALS and their families need help all through the year,” Janet said.
Advocacy week will be held from May 14th – May 16th. To join the Greater New York Chapter delegation or to find out more about how you can get involved head to our website at als-ny.org or call Wendy DuBoff at 212-720-3054.