Page 5 - Neuromuscular | UR Medicine

Rare neuromuscular diseases affect up to 30 million people worldwide. We lead international efforts to provide cutting-edge solutions for patients.

Improving Clinical Care for ALS Home of One of the First Cutaneous
Innervation Laboratories for PN
More than 30,000 Americans have ALS, also known as Peripheral neuropathy (PN)
Lou Gehrig’s disease. ALS destroys the nerve cells that is damage or disease affecting
control muscles, ultimately causing complete paralysis nerves, which may impair
while leaving mental function intact. The disease usually sensation, movement, gland
strikes in middle age, or later, and men are somewhat or organ function, or other

more likely to develop ALS than women. While searching aspects of health, depending
for a cure, we also seek to preserve independence and life on the type of nerve affected.
quality for our patients. The disease often causes

Thanks to Rochesterian Peter Lawrence, we have been able weakness, numbness and
to improve our ALS care. In 2003, Peter established the pain, usually in your hands
Peter Lawrence Golf Tournament for ALS to expand our and feet, but it may also occur
ALS clinics and help patients live a quality life as long as in other areas of your body.
possible. Now our practitioners and therapists meet with Because there are so many different types of peripheral

patients monthly in our clinic to review care plans as a neuropathy, despite its prevalence, relatively little is known
team to ensure optimal care. The tournament provides about the disease process, prevention, and the most
vital funding for ALS patients as this team care is not often effective treatments. There is an enormous need to expand
covered by insurance or government sources. In 2006, the our research to better understand disease mechanisms
Peter Lawrence Golf Tournament Board established an and the potential for therapeutic interventions. Our
endowment fund to ensure the future continuity of care faculty established one of the first cutaneous innervation
for ALS patients. laboratories in the United States at the University of
Rochester in 2000 for diagnosis of small fiber neuropathy,
a condition characterized by severe pain attacks that
typically begin in the feet or hands, to find better ways to
care for patients suffering from this difficult disease.

Chad Heatwole, M.D. “Dr. Heatwole gave us the first glimmer of hope that
someone was actually interested in helping people with this disease,” said

Michael Goldberg.

In appreciation of Dr. Heatwole’s work, Michael and Sherry, along with their son’s
grandparents, Liliyan (Lil) and the late Albert (Alfy) Nathan, made a generous

Albert and Liliyan Nathan gift to DM2 to create a new research program led by Dr. Heatwole. Funds from
the Goldberg Nathan Myotonic Dystrophy Type 2 Endowment will be dedicated

to finding new therapies for the disease. The researchers also plan to begin studying cell samples of individuals
with the condition to evaluate if promising genetic therapeutic strategies in DM1 can also be utilized to help
patients with DM2. “We believe that new therapies for this disease are on the horizon. This gift will help

accelerate these efforts,” said Dr. Robert Holloway, chair of the Department of Neurology.