Rapid Autopsy

We can learn so much from diseased tissues before the tissues degenerate. To
accomplish this, the Hiller ALS team works closely with hospice and WSU pathologists. Tissues in the immediate hours after death show important molecular differences, providing clues to the relentless progression
of ALS.

The Language of Cells

Dr. Fei Song came to Wayne State University from Ohio State University to work alongside Dr. Loeb toward discovering the secrets of growth and survival language between cells and how we might use it as a possible therapeutic target. Dr. Loeb has been studying this communication for 15 years, translating this language as well as developing drugs to work toward a cure.

Quality of Life

Dr. Sindhu Ramchandren came to Wayne State University from Johns Hopkins to focus on improving quality of life for ALS patients. The following need titles in the body of the eblast - they show up when I copy and paste into this email but not in the body of the eblast.Text below is edited.

Spinal Muscular Atrophy (SMA)

SMA, one of the most devastating forms of ALS, occurs in children. Many childhood forms of ALS are caused by genetic mutations
that ultimately kill spinal motor neurons. Children with this disorder often die shortly after birth. Dr. Gyula Acsadi, an outstanding pediatric neuromuscular neurologist, works with the latest gene therapy methods to tackle this devastating childhood disease.

Animal Studies

Dr. Agnes Acsadi and Dr.
Fei Song are looking at human studies of ALS in contrast with those in the animal world. Animal studies complement our patient efforts. Animal studies show us the disease in earlier stages than with human
patients. Both high throughput genome-wide studies as well as focused studies on growth factor are underway.

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DONATE!

Every donation counts! CLICK HERE to indicate your interest
in contributing to the ongoing efforts to cure ALS.

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Introductory letter

Welcome to the first edition of the Hiller ALS Center eblast!
This quarterly newsletter will convey news and updates about research, patient treatment, clinical trials and other important work happening at the Hiller ALS Center.

We are sending this newsletter to donors, patients, colleagues and other interested individuals. If you know someone who might like to receive it, please let us know.

The Hiller ALS Center was established at Wayne State University in late 2007 thanks to a $1 million donation from Jim Hiller, CEO of Hiller’s Markets. Hiller’s vision was to create a world-class clinic at a university with a long and illustrious history in teaching medicine and treating patients. The ongoing goal is to combine research efforts with day-to-day patient treatment for the best insight into the progression of Amyotrophic Lateral Sclerosis (ALS), also known as Lou Gehrig’s disease. The center is staffed by award-winning physicians and researchers including:

• Dr. Jeffrey Loeb, Director of Research, who is
also Associate Director of WSU’s
Center for Molecular Medicine and Genetics
and a tenured professor of neurology
• Dr. Richard Lewis, Clinic Director, who is also Associate Chair of Neurology at WSU Medical School
• Agnes Acsadi, MD, clinic co-director and researcher
• Gyula Acsadi, MD, PhD, pediatric
neuromuscular expert
• Sindhu Ramchandren, MD, neuromuscular neurologist and researcher
• Ximena Arcila-Londono, MD, neuromuscular neurologist and researcher
• Fei Song, MD, PhD, ALS research faculty member
• Omar Kahn, MD, director of the MS Center and ALS imaging core
• Stacey Masse, ALS Center nurse coordinator

ALS is a progressive disease of the central nervous system which causes the gradual degeneration of nerve cells that control voluntary muscle movement. There is no known cure for ALS, which affects more than 30,000 people in the United States. Approximately 5,600 new cases are diagnosed every year. For information about how to get involved with the Hiller ALS Center or to make a donation, click here.

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Current research update

Research subjects for the Clinical Trial of Ceftriaxone in Subjects with ALS are currently being recruited at the Hiller ALS Center and the Detroit Medical Center. Six hundred research participants with Amyotrophic Lateral Sclerosis (ALS) are being recruited for this double-blind study of Ceftriaxone. Ceftriaxone is a cephalosporin antibiotic that is being tested for its safety, tolerability and effect on symptoms of ALS. Interested subjects should contact Stacey Masse, RN, at (313) 745-6124 or here.

Research Update from Dr. Jeffrey Loeb

We at the HALS Center realize that the only way we are going to truly understand the progression of this disease and then create new treatments for ALS is through those most affected – our patients. While there has been a great deal of emphasis on researching animal models of this disease, these models have not yet helped us find a cure.

What makes us different at the HALS Center is that we prioritize research and treatment equally. We have developed a rigorous clinical program that closely follows the detailed progression of disease in each patient. Even patients who go elsewhere for their primary regular care continue to help us by coming in for periodic testing – and agreeing to a rapid autopsy, should they succumb to the disease.

Rapid Autopsy is critical to maximize what we can learn from diseased tissues before these tissues begin to degenerate.To
this end, we work closely with hospice and Wayne State
University pathologists.

Studying tissues in the immediate hours after death provides
a comprehensive look at all molecular differences, which provide clues to the relentless progression of ALS.

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Treatment Update from Dr. Richard Lewis

The Hiller ALS Center is a multi-disciplinary clinic that provides complete support for patients and families dealing with ALS. As this disease affects families in unique and ever-changing ways, we do everything we can to help
families live as fully as possible.

The clinic team meets twice monthly on Friday afternoons. Patients and their families spend as long as 3 hours meeting
with doctors, nurses and other team members. They are greeted by Stacey Masse, the nurse coordinator who serves as HALS patient liaison between visits.

We have a respiratory therapist, a nutritionist, a speech therapist, physical and occupational therapists and a psychologist available for patients. At times, we’ll invite representatives from the Muscular Dystrophy Association or ALS of Michigan to help with social services and support. Genetic counselors also factor into the mix, to discuss issues of inheritance.

After the different members of the team have seen the patient, the doctor spends time with the patient and family discussing the evaluation and recommendations. Questions are answered, information about current clinical trials and research efforts are provided and a treatment plan is agreed upon.

Our clinic days can be tiring, and often emotional, but we at the Hiller ALS Center hope that patients and families leave with an understanding that we are there for them every step of the way and we will attempt to deal with every issue they face.

We are dedicated to working toward a cure as a comprehensive team – with our patients, with every member of our staff and with our colleagues around the world.

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