Unique Collaboration for ALS

ALS (amyotrophic lateral sclerosis) is a grim diagnosis, one that approximately 30,000 people in the United States have been given. Now people living with ALS have a place to turn for help right in Grand Rapids, thanks to the unique collaboration of Saint Mary’s Health Care, Michigan State University, and Mary Free Bed Rehabilitation Hospital.

Commonly known as Lou Gehrig’s disease, ALS causes a relentless deterioration of physical ability leading to muscle atrophy, profound weakness and ultimately a cessation of life. Due to the complexity of this disease, there are probably many more people who have not yet been diagnosed but are suffering with the debilitation that the disease creates.

Saint Mary’s, Mary Free Bed Rehabilitation Hospital and Michigan State University knew we needed to work together for a cure and to help those who have been diagnosed with ALS.

“After two donor families approached us last spring about starting a designated ALS Center, we began to formulate the concept of a collaborative effort with other organizations that would include research,” said Meg Derrer, director of Marketing and Public Relations for Mary Free Bed.

With financial support from the Saint Mary’s Doran Foundation, David Baumgartner, MD, Saint Mary’s vice president of Medical Affairs, worked with David Kaufman, DO, from Michigan State University and John F. Butzer, MD, from Mary Free Bed Rehabilitation Hospital to develop a model for a comprehensive ALS center.

After a summer of planning, the center opened at Mary Free Bed Rehabilitation Hospital in October 2007 as a place for people with ALS to turn for comprehensive care. The center recently became only the 38th MDA (Muscular Dystrophy Association) certified ALS center in the country, as well as the only MDA certified center in the state of Michigan. Our clinic is unique in that it has two locations, one in Grand Rapids and the other in East Lansing, where most of the research will take place.

“The ALS center reiterates our pronounced and long-standing collaboration with Mary Free Bed Rehabilitation Hospital,” said Baumgartner. “We chose the location of the center based on where the patients’ needs can best be met. Mary Free Bed has the necessary equipment for rehabilitation and the space for the center, but each partner will play an important role.” Saint Mary’s neurologist, Deborah Gelinas, MD, who has done extensive research and was clinical director for an ALS MDA-certified center in California, will bring her expertise to this new collaboration.

“At Mary Free Bed, we are very excited about the collaboration with the other two organizations, and the MDA certification really validates the strength of our efforts,” said Derrer. “In Michigan alone, MDA spends approximately $820,000 annually on research to find a cure for ALS.”

The ALS Center is an outpatient clinic that sees patients on the mornings of the first and third Tuesdays every month. Brian Averell, DO, sees approximately six patients during each clinic day at Mary Free Bed. For consistent patient comfort, Averell and an expert team of physicians, nurses, occupational and physical therapists and dietitians all rotate from exam room to exam room to see patients, reducing the burden on patients who have limited mobility.  

Contacting the ALS Center at Mary Free Bed

To make a referral or for more information, please call 616.242.0395 or 800.528.8989. Fax referrals to 616.493.9827.

What is ALS?

With regard to the appearance of symptoms and the progression of the illness, the course of the disease may include the following:

• muscle weakness in one or more of the following: hands, arms, legs or the muscles of speech, swallowing or breathing
• twitching (fasciculation) and cramping of muscles, especially those in the hands and feet
• impairment of the use of the arms and legs
• "thick speech" and difficulty in projecting the voice
• in more advanced stages, shortness of breath, difficulty in breathing and swallowing

The initial symptoms of ALS can be quite varied in different people. One person may experience tripping over carpet edges, another person may have trouble lifting and a yet another may experience slurred speech. Referral to an ALS specialist is required for an accurate diagnosis.

Information obtained from www.alsa.org