To paraphrase Charles Dickens: It was the best day of his life; it was the worst day of his life. Brian and Sandra Wallach were bringing their newborn daughter home from the hospital when Brian’s doctor told him he had Lou Gehrig’s disease (ALS). There was no known cure.
Brian had a comfortable life up to that point. He had gone to the best schools. He had an important career in and out of politics. Knowing that his life would end from the disease, he decided to try to make a difference in how our society approaches support for deadly diseases.
His first effort was testimony before Congress along with other ALS victims. Each got 5 minutes to plead for federal support. Only one member of Congress bothered to show up. At that moment, Brian realized he needed to change how patient advocacy worked.
It took 2.5 years, but Brian did what he set out to do even though his own condition was deteriorating. On 12-23-2021, President Biden signed into law what has become known as the ACT for ALS. Brian helped write the legislation. The Act has the potential to be life saving for ALS patients as well as others with neurological diseases.
What Brian was able to do was bring his knowledge of how Washington works to those who are activists for ALS support. Combining policy expertise with dedicated activists changed the equation. In the past, activists were always able to generate emotional support, but failed to translate that support into action.
In spite of his medical condition, Brian enlisted partisan support from members of Congress for legislation. In a Congress where there are deep divides, the legislation had more sponsors than it needed for it to pass. The vote in the House was 423-3, and the vote in the Senate was unanimous.
Hope and persistence are complimentary attributes. They have to exist together. It took 2.5 years of persistent effort for Brian and others to achieve the results they set out to achieve. What makes this effort especially heartwarming is that those in the fight for change didn’t know if they would be alive to see the results of their efforts. They never gave up even in the face of deteriorating health and near certain death.
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“Persistence and resilience only come from having been given the chance to work through difficult problems.” – Gever Tulley (Author)