Support Paul Seifert’s Fight Against ALS

Paul has spent his career helping people with disabilities and mental disorders. His work has helped to improve health care policy, disability rights, and Social Security Disability for those in need. Today Paul needs our help.

In 2023 Paul was diagnosed with ALS (amyotrophic lateral sclerosis). ALS or Lou Gehrig’s disease is a degenerative disease with no cure. It affects the motor neurons in the brain and spinal cord leading to paralysis and eventually death. Paul has the familial type of ALS, which means his three adult children are also at risk.

Two years ago, he was an active, and independent adult. Today Paul needs a power wheelchair and the constant use of a BIPAP machine to breathe. He needs full-time assistance from health care aides for all activities of daily living, but government support for this care is very limited. The very health care system that he has worked to improve for decades is now failing him.

Paul has spent decades working with these nonprofits advocating on health care and disability issues:

• Goodwill

• The Council of State Vocational Rehabilitation Administrators (CSAVR)

• Children and Adults with Attention Deficit/Hyperactivity Disorder (CHADD)

• The Psychiatric Rehabilitation Association

Over the years he has fought for improvements in health care benefits and policy, the development of the Ticket to Work legislation in the Social Security Disability system, and protection of the rights for people with disabilities. He has been a coalition leader, chairing several Consortium for Constituents with Disabilities task forces. Millions of people have benefited from his efforts.

Even now Paul is spending each day advocating for more research and services for his fellow peers with ALS. On any given day he is meeting with Congressional and Senate staff on Capitol Hill, working with the public policy committees of several ALS groups, or participating in ALS support groups. He recognizes that his efforts will not change policy in time to help him, but his burning desire is to be sure that his children do not face the challenges he is experiencing today.

Paul’s many friends know he is a die-hard Cubs fan and a history buff. His partner, Leslie, has been supporting him every step of the way as he navigates living with ALS.

Your donations will help Paul afford the health care aides that are essential for his ability to function every day. Please help this dear man who still laughs, loves and argues for the importance of better health care, to lead a life of dignity and quality.

Life Before ALS

Paul and Leslie, 2019

With daughters Lisa and Gina, 2007

2018 at Prince Michel Winery

In November of 2020, Paul joined the executive committee of Save River Farm, which included leaders of civic groups and horticultural organizations. This group successfully fought to preserve an historical and horticulturally important site once owned by George Washington. By the end of September 2021 the property had been saved.

The Save River Farm Executive Committee. Seated (L to R): Anne Fafara, Katherine Ward; Standing (L to R): Keister Evans, Dan Straub, Alan Rowsome, Paul.

Advocating for the Ticket to Work legislation to make it easier for Social Security and SSI disability beneficiaries to go back to work and still keep their health care benefits, late 90s.

Ticket to Work advocates and Senate staffer Chris Crowley

With Ticket to Work bill sponsor Rep. Rick Lazio and Speaker Hastert.

Celebrating Senate Passage of the Ticket to Work bill with the late Senator Kennedy and the late Senator Jeffords, 1998

The ALS Journey

March 2023, just after diagnosis - With mental health advocates extraordinaire Andrew Sperling, Al Guida, and Julio Abreu.

June, 2023: What better place to celebrate Father’s Day than Wrigley Field! With (L to R) daughter Gina, son Steve, Leslie, sister Collette, daughter-in-law Kate, daughter Lisa, and nephew Adam. You may spy some Orioles fans in the mix!

October, 2023: At the Ticket to Work Act 24th Anniversary Reunion, with (L to R): David Nexon, Marty Ford, Marie Strahan, Curt Decker, Andrew Sperling, Susan Prokop, Cheryl Bates-Harris, Brandon Macsata, Bonnie O’Day, Ken McGill, Kathy Cameron (widow of the late Tony Young), and Leslie.

Still lobbying, this time for for increased research funding for ALS so future generations can survive this disease. March, 2024.

With ALS advocacy colleagues, 2024

June 2024: Disability advocates reunion on Capitol Hill! Left to right (seated): Paul, Leslie, Jennifer Dexter, Julio Abreu, Liz Savage, Julie Ward, Alaine Perry. Left to right (standing): Donna Meltzer, Andrew Sperling, Al Guida.

Click on the link below to view Paul’s speech at the annual I Am ALS Rally in Washington, DC in May, 2024, in which he advocated for increased funding for ALS research so that future generations can survive this disease. (About 5 minutes long)

https://youtu.be/O8C005fCJZs?si=AZiJ38Rg6Y4jodyo