Ice buckets are empty, but ALS coffers still need filling

Patients, families, employees and friends will Beat Feet for ALS at 8 a.m. Saturday, Sept. 26, at Augusta’s Riverwalk in an effort to raise money for the GRHealth ALS Clinic.

This annual fundraising walk posted a record year in 2014, pulling in almost $145,000 in donations, perhaps driven in part by the popularity and timing of the ice bucket challenge – a unique dare that several Georgia Regents University leaders participated in to raise financial support for ALS.

But much more funding is needed, says ALS Clinic Director Dr. Michael H. Rivner, in order to explore better treatments and improve the quality of life for patients with this debilitating disease that kills most patients within two to five years.

“With ALS, the muscles start to deteriorate rapidly until you are essentially trapped inside your own body, and there is no cure,” said Rivner, Charbonnier Professor of Neurology at GRU’s Medical College of Georgia. “There’s no way to sugarcoat it; ALS is a death sentence.”

But effects of the disease vary, and many people can live with quality in their last years with the help of nationally accredited clinics like the one at Georgia Regents Medical Center.

The clinic, which opened in 2004 through a partnership between the Georgia Regents Neuroscience Center and the ALS Association of Georgia, takes a multidisciplinary and coordinated approach to patient care. Instead of scheduling multiple appointments and trips, patients are able to see neurologists; nurses; physical, occupational and speech therapists; social workers; dietitians; respiratory therapists; and equipment specialists all on the same day. This is especially helpful for ALS patients because of diminishing mobility.

The Georgia Regents ALS team sees patients on the second Friday of each month in Augusta and the fourth Friday of each month at a satellite clinic in Macon. They assess disease progression, functional status, family concerns, and equipment, transportation and referral needs. In addition, family and caregiver training and support are incorporated into the time spent with each patient.

It could cost as much as $250,000 a year to treat just one patient with ALS, so fundraising dollars are financing medical equipment and therapies – often not covered by health insurance – such as wheelchair ramps, home modifications and speech and breathing assistance devices. Funds are also used to purchase gas cards and other items for patients and families who are under financial strains due to ALS.

In addition, donations are supporting several vital research efforts, including a clinical trial of a new ALS drug that follows disease progression and a study on ALS antibodies.

“We were able to fund a pilot project which allowed us to study LRP4 and Agrin antibodies in ALS. Our research thus far has identified these antibodies in around 10 percent of patients with ALS, generating a lot of excitement in the ALS research community,” Rivner said. “If this allows us to pinpoint the cause of ALS in that 10 percent of patients, then perhaps we can identify these patients more quickly and develop better treatments for them.”

Funds raised from the Beat Feet for ALS Walk also support programs administered by the ALS Associations of Georgia and South Carolina and the Muscular Dystrophy Association for patients and families affected by ALS.

To register for the walk or make a donation, visit walk.ALSGRU.com or contact Brandy Quarles at bquarles@gru.edu or 706-721-2681. You can also make a donation directly to the Georgia Regents ALS Clinic on the website or make a check payable to ALS Clinic (Fund 1078) and mail it to 1120 15th St., BP-4390, Augusta, GA 30912.

ALS, or amyotrophic lateral sclerosis, is more commonly known as Lou Gehrig’s disease, named for the late first baseman and power hitter for the New York Yankees. Gehrig was stricken with the neurodegenerative disease that causes muscular atrophy and forced into retirement at age 36. It claimed his life two years later.

About 6,000 people are diagnosed with ALS each year. The GRHealth ALS Clinic cares for about 150 patients between the Augusta and Macon locations.