I know I’m not the only one who questions whether our lawmakers ever really listen to their constituents. I can see you’re nodding. Before my first visit to Washington, D.C. for ALS Advocacy Day I wondered if I was wasting time and money by trying to inform our legislators about the needed changes in laws and additional funds for finding a cure for ALS. The Advocacy Day/Conference provides people with ALS(PALS), their caregivers, and organizations like The Joe Martin ALS Foundation an opportunity to learn about the latest in ALS research, treatments, and to engage our congressional representatives with legislative “asks” that are crucial for families fighting ALS. I enjoy this event because I am able to meet PALS and their caregivers from all over the U.S. It is encouraging to hear their stories and unite to help all families who have been touched by ALS.
But – back to the point – Does it make a difference??? I can without a doubt report, yes it does. Senator Richard Burr explained before announcing new legislation: “Each year, I meet with North Carolinians who have been diagnosed with or affected by ALS, who share the unexpected challenges that come with a devastating disease. It’s through these visits I had the honor of meeting Kathryn Manginelli and her husband Joe. They brought my attention to the unintended impact penalties from early retirement withdrawals have on families like theirs who are struggling with terminal or debilitating illnesses. This is a problem we can fix. Americans who responsibly contribute to their retirement accounts, and who are later diagnosed with a degenerative, terminal illness, shouldn’t be penalized for using retirement funds to help cover unplanned living expenses that are a direct result of their diagnosis. This is especially true for those who will not live to the retirement age. Inspired by Kathryn’s story and others, I am proud to introduce this legislation with my colleague Senator Bennet.” The Kathryn Manginelli Act will allow families in these circumstances to use retirement savings without incurring an additional 10 percent penalty if withdrawing before the age of 59 ½.
And the following accomplishments were also led by ALS Advocates:
- Annual government funding for ALS research has increased from $15 million a year to over $80 million a year.
- Eliminated the 24 month Medicare waiting period for people living with ALS, the only time the law has ever been changed.
- Helped to implement historic regulations at the Department of Veteran Affairs that designate ALS as a service connected disease, ensuring veterans living with ALS and survivors have access to VA benefits.
- Led effort to enact the ALS Registry Act, which created the National ALS Registry and is the largest ALS research project ever created.
There is much work left to be done, but it is encouraging that our voices are being heard and ALS advocacy is making a difference.