HUNTSVILLE, AL (WAFF) - We’ve all seen the devastating impact of ALS, also known as Lou Gehrig’s disease. It weakens muscles and impacts physical function.
Now, scientists at the HudsonAlpha Institute for Biotechnology are working with Crestwood Medical Center to better understand the underlying cause of the disease so that doctors don’t have to solely focus on treatment.
Michelle Amaral, PhD, senior scientist in the HudsonAlpha Myers Lab, is leading the project in collaboration with Crestwood ALS Care Clinic, a National ALS Association Treatment Center of Excellence in Huntsville.
It’s called “Impacting ALS,” which is part of the HudsonAlpha Foundation’s Memory and Mobility Program.
“What we’re doing is enrolling patients who have been clinically diagnosed with ALS and we’re going to do whole genome sequencing on their DNA to find out if we can identify genes or variants in their DNA that may have caused ALS,” Amaral explained.
Unaffected family members can also be involved in the study for comparisons.
ALS (amyotrophic lateral sclerosis) is a progressive neurodegenerative disease that affects nerve cells in the brain and the spinal cord.
“People who have ALS don’t get a lot of answers about what exactly caused their disease,” Amaral said. “So what we want to try to do is to identify any type of genetic events that may have occurred that led to this disease. They then have the ability to decide what they want to do with that information.”
As many as 20,000 Americans live with ALS and 15 new cases are diagnosed in our country every day.
“Sometimes we have environmental effects that are influential in causing disease and we also have genetic effects that can sometimes interplay with that environment so we want to capture what may have been happening genetically in order to cause ALS in a person,” Amaral stated.
They just recently started enrolling patients in the program so if you are a patient at the Crestwood ALS Care clinic, then you are eligible for the study.
The study will continue as long as there is funding.
“ALS is a terrible disease, especially because it affects people when they’re in their 40s, 50s and 60s. And it acts so quickly, that there’s really not a whole lot of time to prepare for things you need to take care of,” Amaral added. “Being able to give them some type of information or insight into their disease is going to be very helpful for people.”
The ultimate goal is to discover biological targets that may be useful for the development of new treatments and therapeutics.
Sherry Kolodziejczak, an occupational therapist and Director of the Crestwood ALS Care Clinic/Cardiac Rehab/Therapy Services/Workers Program, said patients treated at the clinic report a higher quality of life and longer life expectancy.
“Our clinic manages each ALS patient case throughout the course of the illness. We have to prevent the crisis before they come, not when they get here, and that’s how we can prolong life and give good quality of life,” she said.
Led by co-medical directors David White, MD, and Aruna Arora, MD (both neurologists), the Crestwood ALS Care Clinic is the only ALS Association Treatment Center of Excellence in the state of Alabama. The Crestwood ALS Care Clinic is also a Northeast ALS Consortium (NEALS) site. The mission of NEALS is to rapidly translate scientific advances into clinical research and new treatments for people with ALS and motor neuron disease.
ALS patient Bryan Stone of Sylacauga, Ala., a NEALS ambassador for the Crestwood ALS Care Clinic, is happy to see that research is happening right here in Huntsville.
“It’s exciting to see the testing and the collaboration done here at home and that we can take part in it,” said Stone. “ALS has forced me into retirement and there are a lot of activities that I’m not able to do, but then again, it’s opened up other avenues for me to work with the ALS community and help others.”
“Crestwood ALS Clinic physicians and staff really go above and beyond to take care of patients,” said Pam Hudson, MD, CEO of Crestwood Medical Center. “This hopefully will get to the cause of the disease so we don’t have to solely focus on the treatment.”
“HudsonAlpha collaborates with institutions all over the world. It is especially exciting to be working on a project like this in Huntsville,” said Rick Myers, PhD, HudsonAlpha president and science director, “so we appreciate Crestwood’s support and look forward to making even more advances in ALS.”
Additional donations are being accepted and will be used to enroll even more patients who are battling ALS. Donations to Impacting ALS can be made at hudsonalpha.org/donate or to the HudsonAlpha Foundation at 601 Genome Way, NW, Huntsville, AL 35806.