The Hilda Glassman Award
for Clinical Management Research

The ALS Association is delighted to promote the Hilda Glassman Award for Clinical Management Research.  Made possible through the generosity of Hilda Glassman’s family, this award is made annually to one of the research projects approved for funding in The ALS Association’s Clinical Management Research Grant Program.

The Glassman family hopes that this award will improve the lives of patients afflicted with ALS, raise awareness for those choosing to treat the illness, and hopefully help find a cure for this disease.  The Hilda Glassman Award for Clinical Management Research shall live on as her legacy for the future.

Hilda Glasssman was born in 1934 and grew up in Brooklyn.  Her parents had emigrated from the Ukrainein 1917 during the Bolshevik Revolution.  In 1965, Hilda’s father began experiencing neuromuscular difficulties and died of amyotrophic lateral sclerosis on New Year’s Eve, 1966.  The profoundness of this event would not be fully realized until 30 years later.

In 1993 Hilda began having difficulty walking.  After many visits to doctors throughout New York City, she was diagnosed in 1994 with ALS.  As the disease progressed during the next two years – from her legs to include her arms and her ability to speak – Hilda would not give up the independence of going to work every day.  And because, for Hilda, life had to be enjoyed to the fullest, a three-week trip to Hawaii in 1994 and a sojourn in Atlantic City would not be missed.

She and her family sought out clinical drug trials and enrolled in an “early access” program for one ALS treatment under development.  While she did not secure acceptance for any of these, she never gave up the fight; never gave up the search for a cure.  She and her husband, Hy, became advocates for ALS patients, going to Capitol Hill to meet with legislators and the FDA to encourage that drugs for ALS be put on a fast track for approval.  Despite her energy, Hilda’s determination was not enough.  In the spring of 1997, she died in her sleep of respiratory complications.

What is remembered about Hilda to this day is the love that she shared for all of her family and friends, the joy and fun times she had with all those around her and the incredible strength that she showed in the face of a horrible disease which she had seen take her father 30 years before and knew quite well what lay in store every step of the way.

In life and death, Hilda Glassman was a uniquely courageous and inspirational woman who had compassion for those around her and understood that sometimes life doesn’t go the way you planned it, but you must not run from the bad times.  Her energy and talents as a wife, mother, grandmother, business associate and friend made Hilda an endearing person to all who knew her.

Recipients of The Hilda Glassman Award
for Clinical Management Research

2007
Julie Rowin, MD, University of Illinois Medical Center
External nutrition in ALS patients with Ventilatory Failure: minimizing the work of breathing

The objective of this study is to examine if ALS patients with PEG tubes (percutaneous endoscopic gastrecomy tube) and respiratory dysfunction have additional breathing problems after a feeding.  The reason that we are interested in this topic is because evidence has shown an increased mortality rate in ALS patients after a tube is inserted into the stomach for feeding when the patient has breathing problems, i.e. when the patient’s vital capacity falls below 50% of what would be predicted in a normal healthy adult.  It is not clear why this is so because the procedure of placing the PEG tube is generally very safe. 

2005
Edward Kasarskis, MD and Alyssa Averhill, MS
University of Kentucky VA Medical Center
Lexington, Kentucky

Although dealing with ALS involves a number of psychological issues, not many studies have focused on examining the psychological aspects of ALS, and, so far, none have included a psychological intervention.  This is surprising because several researchers have suggested that ALS patients’ psychological adjustment may be more important to their quality of life than the physical progression of their disease.  Our study will look at how emotional disclosure, a psychological intervention, might affect ALS patients’ physical and psychological health and overall quality of life.  Emotional disclosure, which simply involves writing or talking about a stressful or traumatic event over three days, has been tested in patients with other chronic diseases and been linked to fewer visits to the doctor, better mood, and even a healthier immune system.  Based on this research, we are hopeful that the emotional disclosure intervention will result in more stable physical health and better psychological health for ALS patients.  Disclosure may provide ALS patients with an outlet for their emotional responses to the disease in a private, simple, and inexpensive way.  We will test this intervention with the long-term goal of finding a practical strategy to enhance ALS patients’ quality of life.

2004
Marcus Weber, MD, Kantonsspital St. Gallen CH-9007 St., Gallen, Switzerland

Randomized Placebo-Controlled Crossover Trial with Delta 9- Tetrahydrocannabinol (THC) for the Treatment of Cramps in ALS

The purpose of this study is to investigate the efficacy of THC in the treatment of cramps. It is hypothesized that severity of cramps will improve significantly in patients treated with THC compared to treatment with placebo.

2003
Amy Ellis, Amy Cameron, MPH, RD, LDN, Carolinas Neuromuscular / ALS-MDA Center
Carolinas Medical Center, Charlotte, North Carolina

Modifying Nutritional Therapy in ALS Patients with Changes in Respiratory Status

For patients with amyotrophic lateral sclerosis (ALS), maintaining good nutrition is very important.  Weight loss and malnutrition are associated with shortened survival, while nutritional repletion has been shown to prevent weight loss and improve survival.  This study is to determine if the caloric requirements in ALS patients are different at the various stages of respiratory compromise leading to ventilator dependence.

2002
Michael J. Strong, M.D., FRCP, Motor Neuron Disease and General Neurology at London Health Sciences Centre, London, Ontario, Canada  

A prospective study of rapid CT cerebral blood flowing imaging in the detection of cognitive impairment in sporadic amyotrophic lateral sclerosis.

In contrast to the traditional concept of ALS in which the neurolbiological process is largely restricted to the motor system, our contemporary understanding of ASL is a more broad based neurodegeneration in which the involvement of motor neurons is one of early sensitivity rather than selectivity.  There is little doubt that cognitive impairment can occur in ALS.  However, the prevalence of cognitive impairment in ALS needs further study and there are no prospective, longitudinal studies using a multimodal approach.  This study will prospectively characterize the nature of the cognitive deficits in ALS, and using combined clinical and neuroimaging methodologies, describe its natural history.

2000
Charles M. Weiner, M.D., Johns Hopkins University, Baltimore, Maryland  

The Measurement and Treatment of Respiratory Impairment in patients with Amyotrophic Lateral Sclerosis

There is increasing evidence suggesting that in order to properly counsel and treat ALS patients it is important to detect respiratory involvement at earlier stages of the disease.  There is a need for more accurate non-invasive tests to predict inspiratory muscle impairment.  This study aims to determine 1) if upright and supine FVC measurements predict transdiaphragmatic pressure, 2) whether NIPP can improve lung compliance in patients with respiratory muscle weakness, and 3) whether NIPPV can alter the decline in pulmonary function.  This is a randomized, crossover trial of NIPPV and will also measure quality of life.

1999

Michael J. Strong, M.D., FRCP, Motor Neuron Diseases and General Neurology at London Health Sciences Centre, London, Ontario, Canada

The Impact of Enteral Nutritional Support on the Quality of Life of ALS Patients and their Primary Caregivers

Through a variety of research survey tools, Dr. Strong’s research study investigates the hypothesis that, “While enteral nutritional support may not alter the survival of ALS patients, its provision will enhance their quality of life and/or that of their caregiver.”  The objectives of Dr. Strong’s investigation are:  1) to determine if the implementation of enteral nutritional support affects the quality of life of ALS patients, and, 2) to determine if the implementation of enteral nutritional support affects the caregiver burden and/or the quality of life for caregivers.

1998

Terry D. Heiman-Patterson, M.D., Medical Director of the ALSA Center at MCP Hahnemann University, Philadelphia, Pennsylvania

A Prospective Trial of Bipap Use in Patients with ALS

Dr. Heiman-Patterson believes that the results of her retrospective study and the small prospective studies to date provide compelling evidence that non-invasive positive pressure ventilation (NIPPV) is useful in ALS.  However, in these studies, NIPPV was introduced relatively late when Forced Vital Capacity (FVC) had already declined or when the patients were already symptomatic. This leaves open the question of whether early intervention would provide added benefit. Furthermore, it has not been shown that by prolonging life, there is any improvement in the quality of life.  This study provides the first large prospective trial on noninvasive ventilation and address both the issue of earlier intervention and include quality of life assessments. The results will directly impact patient care and help to provide a standard of care that can be applied to all patients in any clinical setting.

The overall aims of this project are: 1) to evaluate whether earlier initiation of Bipap increases the effect of Bipap on survival and further slows the rate of pulmonary decline as measured by indicators of respiratory muscle strength and endurance; and 2) to evaluate whether the use of Bipap improves the quality of life.

This study will compare survival, pulmonary function, respiratory symptoms and quality of life between two groups of patients. Bipap will be initiated when the vital capacity drops to 80% of expected for patients in one group. Patients in the second group will have Bipap initiated when the vital capacity drops to 50% of expected or there is a 15% drop in vital capacity over a three months or if the patient has difficulty breathing.