August 27, 2008, 10:19 pm

Welcome to HNF!

SPECIAL ANNOUNCEMENTS

HNF's 1st Spin-a-Thon Raises $73,000!

The Ironwill/Hereditary Neuropathy Foundation Spin-a-Thon was held at Fuel Fitness in Tenfly, NJ on Saturday June, 14th. The event was a huge success, bringing in $73,000 to go directly towards funding out new, exciting research that we hope will find a cure for CMT.

HNF President and Founder, Allison Moore spun for three hours and Executive Director, Terri Eickel did the full six!

If you are interested in running your own Spin-a-Thon is your area, please conatc Mary at mary@hnf-cure.org.

Latest Articles:

Issue date: August 27, 2008
Meet Our Newest Columnist, Linda Crabtree! [Personal Profiles]

Some of you might remember our newest columnist, Linda Crabtree. Linda founded CMT International in 1984 and for 18 years she and her husband, Ron Book, ran the organization out of their home offices in St. Catharines, Ontario, Canada - a stone’s throw from Niagara Falls. More...

Issue date: August 20, 2008
The IShoe, a New Device, Predicts—and Prevents—Falls [Product/Serv. Reviews]

One of the problems with CMT is that its symptoms, like frequent falls, can be unpredictable. Wouldn’t it be great if we could predict—and prevent—a bad fall before it happened? A new device, created by an MIT graduate student called the iShoe insole could help doctors detect balance problems before a catastrophic fall occurs. The findings were outlined in a July 24 report entitled “Balance Problems? Step Into The IShoe” from researchers at MIT. More...

Issue date: August 11, 2008
Regular Walking Cuts Elderly Disability Risk [CMT Exercise]

If someone told you that you could increase your likelihood of maintaining independence by 41 percent by participating in a simple walking program, would you do it? For older adults with CMT who are able to walk without pain or difficulty, there is mounting evidence that a walking program is one of the most beneficial exercise routines out there. Not only that, but is one of the cheapest, most low-tech activities available. More...

Issue date: July 30, 2008
HNF Member Melinda Lang: Living with CMT [Personal Profiles]

This week we received a story from Melinda Lang of Cohoes, NY. Melinda wrote about the process of getting diagnosed with CMT and how her life has changed now that she is living with the disease. We hope that some of you will relate to Melinda’s experiences. Here, in her own words, is her story: More...

Issue date: July 25, 2008
Williams College Biologist Lara Hutson Wins $220,000 NIH Grant to Study CMT [Research Reports]

In July, we caught up with Williams College Assistant Professor of Biology Lara D. Hutson, the winner of a two-year grant of $220,076 to support her research on Charcot-Marie-Tooth disease or CMT from The National Institutes of Health (NIH). More...

NEWSFLASH

The HNF Spin-a-Thon

Coming Soon:
Spin for the Cure
The HNF/IronWill Foundation Spin-a-Thon
March 31, 2008 More...

A Message to Duke University Research Participants

We are looking for individuals who participated in a genetic study of CMT at the Center for Human Genetics at Duke University. The researchers conducting this study moved to the Miami Institute for Human Genomics at the University of Miami and would like to notify participants of this change. If you participated in this research project and do not want your samples and data used by the University of Miami, or have questions about this transition, please contact study staff at (800) 385-3244. You may also contact the research team in Miami at 1-877-6UM-MIHG (1-877-686-6444).

February 12, 2008 More...

HNF Announces New Research Project!

The Hereditary Neuropathy Foundation announced today that it was awarding a research grant to the University of Nevada, Las Vegas for the purpose of studying the performance of the Helios brace on people with Charcot-Marie-Tooth disease (CMT.) The study, to begin in 2008, will study 20 patients with bilateral foot drop resulting from their CMT. A call for subjects will be forthcoming in January 2008.
December 19, 2007 More...

Embryo-Free Stem Cell Research Breakthrough!

In a breakthrough that could have significant impact on anyone at risk for a genetic disease, scientist on two different continents have discovered how to make adult human skin cells behave like stem cells. This tremendous advance could pave the way for stem cell research, working around the controversy over using human embryonic cells.

November 29, 2007 More...

University of Michigan Study Finds New Causes for Neurodegeneration

Tragically, the causes of many neurodegenerative diseases, such as Multiple Sclerosis and Alzheimer’s, are still unknown, despite millions of dollars spent on research each year. However, a breakthrough from the University of Michigan was revealed as researchers found a previously unsuspected link between a signaling molecule and neuron health.
October 29, 2007 More...

HNF Update!

The Hereditary Neuropathy Foundation scored another win in the battle against CMT this week! As part of our National Awareness Campaign, President Allison Moore and Executive Director Terri Eickel were interviewed on National Public Radio. Hundreds of thousands of people tuned in to hear Allison and Terri talk about life with CMT and their commitment to finding a cure, and to hear a preview of HNF’s plans for this year – including our exciting Accelerated Research Strategy.

Upcoming this fall – we have just seen the first design draft of our new Essential Guide booklet: What It Is Like To Live with CMT and we are thrilled! Additionally, we are getting ready for our second issue of CMT Update, our medical newsletter.

We are making great strides in our fight against CMT, but we need your help. Your generosity brings us closer each day to our goal – a world without CMT. Please click here to help make a difference.

October 24, 2007 More...

Safer Gene Therapy: MIT Breakthrough

Gene therapy has a lot of potential for those with genetic diseases. However, the conventional technique of using viruses to carry the genes creates risk for the procedure. Researchers at MIT have found a way to decrease this risk by using biodegradable polymers to deliver the genes. This breakthrough could leave to safer and more effective techniques for gene therapy, paving the way for an FDA approved gene therapy.
October 24, 2007 More...

AUTUMN ROUND-UP!

The Hereditary Neuropathy Foundation is having an amazing third quarter in our work to promote education and awareness of CMT and fund research for a cure. Our ad appeared in Ladies’ Home Journal and in the Journal of Bone and Joint Surgery. Allison Moore, President and Founder, and Terri Eickel, HNF’s Executive Director, will be interviewed on National Public Radio’s Community Concerns on October 21. HNF is also expanding our Essential Guide series with Essential Guide: What It Is Like to Live with CMT and we are getting ready for our second issue of CMT Update, designed to educate doctors about CMT. Finally, we had our 2nd Annual Golf Outing on September 25th at the Meadow Brook Country Club, raising more than $65,000 dollars to support the work of HNF.

We have made great progress in the past few months, but we can’t do it without you. If you haven’t had a chance to support our work, please click here to do so. We have the researchers, the technologies, and the knowledge. But it is your support that will make the difference and it is your support that will find a cure. For this, we thank you from the bottom of our hearts.
October 12, 2007 More...