Neuropathy Conference Report/Review NT3 and more

[Guest guest]

The Neuropathy Association's Biennial Meeting Offered Help and Hope

From as far away as Belgium and Brazil, more than 300 individuals

celebrated The Neuropathy Association's l0th Anniversary during its

2nd Biennial Membership Conference in Minneapolis, MN. What made

the event even more special is that it was held during National

Neuropathy Week which was recognized for the very first time this

year.

Hosted by the Association's Minneapolis Chapter, the two-day

conference (May 21-22) received high marks from its attendees. " I no

longer feel that I am virtually alone in the fight against this

disease, " said one from the Dakotas. " I have found lots of kindred

souls, now new friends, who share my interest in battling this

disease. I am now convinced that by bringing education, advocacy and

research to bear, we can beat this disease. "

The conference was preceded by a day-long meeting of leaders of some

of the more than 250 Association support groups in the U.S., Canada,

Latin America and Europe. Their sessions were devoted to

strengthening the support group network with practical tips on

organization and motivation. Leading the discussions was

Ashdown, a leading patient advocate in Canada and the U.S.

The conference, open to all persons interested in neuropathy,

featured informative and hopeful presentations by several leading

medical researchers in the field of peripheral neuropathy:

Zarife Sahenk, M.D., director of the Neuromuscular Division and the

Experimental Neuromuscular Laboratories at Ohio State University,

outlined advances in her studies of the role of neurotrophin-3 (NT3)

in nerve regeneration in patients with Charcot-Marie-Tooth (CMT)

neuropathy. NT3, which encourages nerve growth, is secreted by the

Schwann cells that form a protective insulation (myelin sheath)

around peripheral nerves.

Mark Hannibal, M.D., a clinical geneticist at the University of

Washington reported that his research team believes (subject to peer

review) it has identified the genetic seed of a rare type of

neuropathy, hereditary neuralgic amyotrophy (HNA). This disorder

affects the brachia plexus, which is located in the arm pit and is

the largest nerve network in the peripheral nervous system.

Identification of the gene that causes the hereditary types of HNA

could also provide insight into what causes the more common

idiopathic (unknown source) type of this disorder.

The research efforts of Dr. Hannibal and Dr. Sahenk are supported by

grants given by The Association.

" I came to this conference feeling pessimistic about our chances of

finding a cure anytime soon, " one attendee remarked. " I'll be

leaving here with more hope than doubt, and committed to help to

raise public awareness and research funding. "

This point was reinforced in dinner remarks by Dr. Norman Latov of

Cornell University and in a special video presentation by the

Association's spokesperson Mother Dolores Hart, a former film star of

the Fifties and now cloistered nun. Both stressed the importance of

The Association's leadership and accomplishments in promoting more

research funding and in providing comfort and support to patients.

Mother Dolores poignantly told of her being physically weakened by

neuropathy, but spiritually strengthened by it to help others by

speaking out.

Four of Minneapolis' top neurologists had major roles in the

conference. Drs. Walk and Garath Parry, colleagues at the

University of Minnesota School of Medicine, gave fact-filled

presentations on inflammatory and painful neuropathies. Dr. Leland

, a practicing physician at the Minneapolis Clinic of Neurology,

gave a general overview of neuropathy and Dr. Schriefer of the

Noran Neurological Clinic zeroed in on diabetic neuropathy. Dr.

's research has also focused on peripheral nerve damage cause by

diabetes and Fabry Disease.

Other topics covered during the conference dealt with ways to cope

with and care for the symptoms of neuropathy, including medications,

meditation, foot care, physical well-being and balance,

In evaluating the conference, nearly all attendees said they found it

useful. Even more gratifying was the hope instilled in many. As one

woman said in an expression of gratitude, " Thank you so much for this

opportunity. After being here I truly believe that we will find a

cure for this debilitating disease and restore the lives of the

millions it has affected. "