May 9, 2008, 12:26 pm

Welcome to HNF!

SPECIAL ANNOUNCEMENTS

Support HNF's 1st Spin-a-Thon!
http://hnfspinathon.dojiggy.com/

The Ironwill/Hereditary Neuropathy Foundation Spin-a-Thon is a six-hour spin to raise awareness and funds to find a cure for Charcot-Marie-Tooth disease (CMT). The event will be held at Fuel Fitness in Tenafly, NJ on Saturday, June 14th.

HNF President and Founder, Allison Moore, along with Executive Director, Terri Eickel and Membership Director, Mary London, will be spinning the six-hour event on the HNF Team Bike! Please sponsor the HNF Team and help us reach our goal of $50,000 for the event!

If you are interested in participating in the spin-a-thon, please visit the spin website for registration information.

Latest Articles:

Issue date: May 2, 2008
Baker’s Yeast: A New Tool to Combat Neurodegenerative Disease [Research Reports]

Researchers from the University of Pennsylvania School of Medicine say yeast, the same substance used to make bread rise, has potential for combating neurodegenerative diseases, such as amyotrophic lateral sclerosis (ALS), or Lou Gehrig's disease. By extension, this research could also benefit people with Charcot Marie Tooth and other hereditary neuropathies. More...

Issue date: April 22, 2008
Yoga May Prevent Falls in the Elderly, among Other Benefits [Product/Serv. Reviews]

Researchers at Temple University's Gait Study Center have found that Iyeynger yoga—a basic yoga regimen that stresses proper ways to breathe, stand and pose—had helped improve stability and balance in women over age 65, and, thus, may also help to prevent falls. We at HNF feel that this type of yoga could be beneficial to the person with CMT as well, in that anything that prevents debilitating falls—in men or women—is a good thing! In addition to preventing falls, the yoga helped alleviate pain and improve the overall mental outlook for many participants. More...

Issue date: April 16, 2008
A Cup of Coffee a Day May Keep Alzheimer’s at Bay [Research Reports]

Last August, a study of older women showed that caffeine helped them protect their thinking skills. On April 3, 2008, researchers at the University of North Dakota School of Medicine and Health Sciences reported that a daily cup of java has other beneficial effects in that it blocks the disruptive effects of high cholesterol linked to Alzheimer's disease. A study in the Journal of Neuroinflammation revealed that the caffeine in just one cup of coffee a day could protect the blood-brain barrier (BBB) from damage that occurred with a high-fat diet. More...

Issue date: April 8, 2008
Genetic Counseling Over the Phone? [Product/Serv. Reviews]

We at HNF have always recognized the conundrum surrounding genetic testing for a hereditary condition such as CMT. Before undergoing genetic testing, questions swirl. Patients want to know: “Should I be tested? If so, what would I do with the information? Should I tell my children that they are susceptible to the disease? Should I have them tested? Am I opening up a can of worms that I can’t close?” Now, researchers at Georgetown University have officially recognized the problem in their research. More...

Issue date: April 2, 2008
Promising Study for People with Neurodegenerative Conditions [Research Reports]

In yet another study based on mouse models, which appeared in the Journal of Clinical Investigation (March 18, 2008), Boston-based researchers have learned that there is an agent that protects nerve cells from damage and markedly reduces disease progression in mice with MS. 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...