Laura Lambrecht never expected to lose her father, Mark, in the way she did two years ago. Mark suffered from ALS, or Lou Gehrig’s disease, a devastating nervous-system illness that slowly robs patients of their independence and ability to live a normal life. He passed away peacefully at home in January 2020, just a year after his diagnosis.
Mark was born in Norfolk and went on to attend the University of Nebraska-Lincoln, where he met his wife, Kristi. They were married in 1978, and that same year, the Lambrechts started a glass studio in Omaha, which soon became their life’s work. Mark and Kristi raised three wonderful daughters in Nebraska, including Laura. Laura says she and her family will remember Mark as a hardworking entrepreneur, a loving father and husband, and a man of deep faith.
Mark lived a remarkable life. But ALS doesn’t discriminate. It will affect one in every 300 Americans at some point in their lives. Veterans are twice as likely to receive a diagnosis as those who haven’t served, and every single day, 15 families like the Lambrechts will hear that one of their loved ones has been diagnosed with ALS.
There is no surviving this disease, with most people living no more than a few years after they are diagnosed. And even though modern medicine has made incredible breakthroughs in the fight against many other diseases, doctors have worked in vain to find a cure since ALS forced Lou Gehrig to retire from baseball in 1939.
There may not be a cure yet, but there are many promising treatments. To help families like the Lambrechts gain access to them, I co-sponsored the Accelerating Access to Critical Therapies for ALS Act.
This vital bill passed the House and Senate in mid-December 2021, and President Biden signed it into law just before Christmas. It will help develop important treatments for ALS and other rare and fast-progressing diseases, including by establishing a public-private partnership between the National Institutes of Health, the FDA and major universities and nonprofits.
The ACT for ALS Act will also expand the range of treatments available to ALS patients. Because of this bill, researchers will be able to offer potentially life-changing treatments to patients who may not qualify for clinical trials, but who might benefit from the experimental drugs being studied. Roughly 95% of people suffering from ALS fall into this category, including Mark Lambrecht. These treatments are often the only option ALS patients have, and no one should be denied access simply because they failed to qualify for a clinical trial.
Finally, this bill will create the Rare Neurodegenerative Disease Grant Program at the FDA. This program will be indispensable to the medical community as they search for new ways to fight back against ALS and other rare diseases.
The Act for ALS Act equips families like the Lambrechts with the tools they need to fight back against this disease. Among the most important of these is hope — hope that there might be a treatment out there that could work for them. Expanding access to these treatments is the right thing to do, and Congress did it in a bipartisan manner when we passed this bill.
As we begin a new year, I am proud that we have taken this important step forward in the fight against ALS and other rare diseases. And God willing, we are one step closer to finally finding a cure.