University of Miami center seeks diseases' origins

November 29, 2007

A new Miami Institute for Human Genomics, which will search for genetic origins of common diseases such as autism and Alzheimer's, opened its doors Tuesday to great expectations.

Its purpose: changing the way medicine works.

''The future of medicine depends entirely on projects from the field of genomics,'' or the study of all the genes in humans, medical school dean Dr. Pascal Goldschmidt said at Tuesday's opening.

The University of Miami institute is only the second of its kind in the United States. The Broad Institute of Harvard University and Massachusetts Institute of Technology was founded in 2003. Genomic research is part of the focus at Scripps Institute at Florida Atlantic University in Boca Raton, where 230 researchers are looking at discovering new drugs.

The UM genomics institute will focus on the genetic origins of multiple sclerosis, age-related macular degeneration, amyotrophic lateral sclerosis (Lou Gehrig's disease), tuberculosis and Charcot-Marie-Tooth disease, as well as cardiovascular disease, neurodevelopmental disorders and cancer.

Read the rest of University of Miami center seeks diseases' origins

It's National Neuropathy Week, May 14-18, 2007

May 14, 2007

Mark Your Calendars for National Neuropathy Week, May 14-18, 2007

May 14-18th has been designated National Neuropathy Week by the U.S. Office of Disease Prevention and Health Promotion. The Neuropathy Association initiated the tradition in 2005 in conjunction with its 10th anniversary celebration to bring greater public awareness about a condition estimated to affect more than 20 million Americans.

This May, we again strive to bring hope and help to the millions dealing with neuropathy, says Tina Tockarshewsky, executive director of The Neuropathy Association. And we renew our own public appeals that more attention and resources be dedicated to this stealth nerve destroyer.

This year, the Neuropathy Association is launching its first national public service ad campaign. Featuring Angela Lansbury whose husband had neuropathy the TV ads will appear nationwide throughout the year to raise awareness of neuropathy's early warning signs and
symptoms.

In addition, the Association is asking its members and anyone with neuropathy to help with its outreach efforts. Within our own means and abilities, we each have opportunities to advocate for neuropathy, says Ronnie Chalif, president of The Neuropathy Association. We can lead in ways large and small. How we handle our illness on our own behalf becomes a very real testimony to others on what it means to live with neuropathy.

For more information, contact The Neuropathy Association at 212-692-0662 or 1-888-PN-FACTS.

A message from The Hereditary Neuropathy Foundation - Happy New Year!

January 13, 2006

Our resolution at HNF-cure.org is to increase the amount of NEW CMT information for YOU - starting now! In a positive direction, we have enhanced our staff with experienced writers and have established procedures to ensure that new information is reaching you in a timely and consistent fashion.

You can expect a constant flow of valuable articles, an expanded Questions and Answers library, in addition to updates and announcements reaching you via our traditional email Newsletter avenue, but in a new format.

Congressional Committees Again Urge More Neuropathy Research

December 05, 2005

For the second consecutive year, the appropriations committees of both houses of Congress have approved specific language written by The Neuropathy Association urging the National Institute of Neurological Disorders and Stroke (NINDS) to strengthen its research portfolio for peripheral neuropathy. The language is part of a report that will accompany legislation appropriating more than $1.5 billion for the agency’s FY2006 budget. [Read more]

Booklet is ready and more news from HNF - October 2005

October 28, 2005

The following is from the Hereditary Neuropathy Foundation's October newsletter:

We're pleased to announce that our patient information booklet is now available for distribution to our registered HNF members. This high-quality production presents an in depth overview of the common experiences of coping with CMT. This essential guide is provided to HNF members along with full access privileges to www.hnf-cure.org. For members who have registered and provided a membership donation, we thank you and hope you will find our booklet of assistance.

Be sure and register at www.hnf-cure.org and read our latest research article to learn how researchers from Howard Hughes Medical Institute are using muscle tissue from tarantulas to understand the detailed structure and arrangement of molecular motor control; a key component needed to better understand the progressive nature of CMT.

Our public awareness motto is "leave NO stone unturned" and we’ve been busy turning over stone after stone, all the way to Capital Hill! In the past few months we've met with government officials in Washington D.C.; presented at the American Academy of Neurology, in Atlanta, Georgia; and promoted our children's book at the world renowned New York Book Expo.

Jump on board... if you'd like us to forward our patient information booklet to your family physician or neurologist, simply provide us their contact information through our email at: info@hnf-cure.org. This courtesy is available to HNF members nation wide.

As you approach the holiday season be sure and pace your energy and check out the special gift giving items available through iGive. Why shop til you drop when you can conveniently click your way through the stores... while at the same time support up and coming projects, all geared to improve the quality of life of people with CMT. And by the way; did you know there is an official CMT postage stamp now available? Just imagine - your snail mail can help LICK CMT as all sales proceeds will be directed to research slotted for 2006.

In the meantime, we wish you and your family a safe and enjoyable celebration this Thanksgiving!

Susan Wheeler, Executive Director
Allison Moore, President

New NT-3 Editorial by Dr. Pleasure & Dr. Chance

September 17, 2005

Gretchen of CMTUS has posted a copy of an editorial about NT-3. (Join the group to access their files.)

I have just uploaded the NEW NT-3 Editorial by Dr. David Pleasure and Dr. Phil Chance (CMT Experts) that was published in Neurology. 2005 Sep 13;65(5):662-3 the title is "Neurotrophin-3 therapy for Charcot-Marie-Tooth disease type 1A." You can find this in our CMTUS Files under 'NT-3' click folder to open, then look for 'NT-3 Editorial'. Vitamin C is mentioned too.

And special thanks to Dr. Chance (in Seattle) who honored my request to read this editorial and send me a copy :) Thanks too, to Dr. Pleasure from the University of California at Davis.

Neurotrophin 3 Shows Promise in CMT

September 09, 2005

MDA Research News has a short article about the success of NT3 for nerve regeneration in a small study of CMT1A patients. Again, this isn't specific to Dejerine-Sottas, but may turn out to be applicable for future research.

A pilot study of eight people with Charcot-Marie-Tooth (CMT) disease, a disorder in which signals in the peripheral nervous system are impaired, has found that treatment with neurotrophin 3 (NT3) improved sensory function and nerve regeneration.

Gradient guides nerve growth down spinal cord

August 16, 2005

The same family of chemical signals that attracts developing sensory nerves up the spinal cord toward the brain serves to repel motor nerves, sending them in the opposite direction, down the cord and away from the brain, report researchers at the University of Chicago in the September 2005 issue of Nature Neuroscience (available online August 14). The finding may help physicians restore function to people with paralyzing spinal cord injuries. [Medical News Today]

The Neuropathy Association's Biennial Meeting Offered Help and Hope

July 08, 2005

Zarifa 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. [The Neuropathy Association]

Nerves' Growth Depends On 'Dual-action' Protein

July 05, 2005

By studying nerves in "pre-tadpole" frogs, researchers at the Johns Hopkins Institute for Cell Engineering have uncovered the first link between two key biological factors that guide growing nerves.

The finding sheds light on how nerves grow in the right direction so they can connect to the right places--critical information to have if damaged nerves are ever to be repaired in people. In particular, the discovery reveals for the first time how the guidance cues that attract or repel the tip of a growing nerve influence the flow of calcium ions into the nerve cell, solving a decades-old mystery.

"For 20 years researchers have known that calcium flow is critical for proper nerve growth, but no one has known how it gets into the nerve in response to a guidance cue," says Guo-Li Ming, M.D., Ph.D., assistant professor of neurology in the Institute for Cell Engineering's Neuroregeneration and Repair Program. "Now we have some details about how that happens in frogs. The findings are likely to hold for other animals and people, too, because we have similar versions of these proteins."

Read the rest of the article at Science Daily.

Looking for Cures

July 04, 2005

The University of Pittsburgh is making a big push into drug discovery by opening a laboratory that will focus exclusively on treatments for rare diseases, especially some kinds of cancer....

New treatments for a range of similar diseases, including Parkinson's, Lou Gehrig's and Alzheimer's, also may be discovered in the new lab, according to Dr. Steven DeKosky, director of the Alzheimer's Disease Research Center at Pitt. In this family of medical problems, protein molecules go bad, setting off a cascade of cellular changes that result in neuromuscular problems, including difficult speech and movement, DeKosky said.

The hope is to find compounds whose molecules block the start of the cascade, kind of like finding a key that fits a specific lock, said DeKosky. "It's a hugely exciting time."

Read the rest of the article at MSNBC.

'Cure' no longer wrong word in paralysis research

April 24, 2005

Until recently, Dr. Stephen G. Waxman, director of the Yale University-affiliated Center for Neuroscience and Regeneration Research, refused to use the c-word.

Repairing severed spinal cords, treating multiple sclerosis or relieving the intense pain that lingers after an amputation were far too distant goals.

"Cure" was a false promise.

Now, restoring certain physical functions and mending torn, severed or diseased nerves is almost in reach.

Read the full article.

CMT research funding and results make headlines

February 02, 2005

From HNF-Cure.org: The first major advance comes with the passing of the “FY 2005 Labor, Health and Human Services, and Education Appropriations” bill by the United States House of Representatives. This bill includes a call by Congress to have the National Institute of Health (NIH) investigate mechanisms of increasing federal research on CMT and CMT-related disorders. The NIH is to report back to Congress by March, 2005, paving the way for increased research in the near future. An associated report the notes that [Congress is] “concerned about the prevalence of this disease and its effect on people across the age spectrum and recognizes the value of CMT research for advancing understanding into other neuromuscular disorders. The Committee encourages NIH to identify new research opportunities on CMT that could lead to a relevant program announcement or request for applications.” The legislation must be also be reviewed by the U.S. Senate, but once enacted will direct funds to the NIH to enable the review to be undertaken.

A second major advance came with the publication of the September 9th issue of the prestigious science journal Nature. The front cover of the issue features a lead headline about new research into Schwann cell function. Schwann cells are the cells that make myelin, the coating that insulates electrical signals carried by the peripheral nerves. The article "Restricted growth of Schwann cells lacking Cajal bands slows conduction in myelinated nerves", by Court et al. reports on new research from the University of Edinburgh Centre for Neuroscience Research. Court et al.’s study identified that longitudinal bands in the ‘meshwork’ beneath the plasma membrane of myelinating Schwann cells, which they term Cajal bands, are absent in mutant Schwann cells. Their results show this leads to slowed nerve conduction times, a clinical feature prevalent in some variants of CMT, including the most common form: CMT-1A. The cover also featured a full colour picture of Cajal bands. This exciting work may lead to development of gene therapy to treat demyelinating forms of CMT and, with its publication in Nature, dramatically raises the profile of CMT-related research both within the medical and scientific community, and the public at large.