CATEGORIES: Research

Get the Latest Neurology News!

by | Aug 15, 2012 | 1 comment

Thanks to the American Academy of Neurology (AAN), obtaining the latest information on neurological conditions is a cinch.  AAN’s magazine Neurology Now is available at www.NeurologyNow.com  and offers an IPAD version as well as the option of a print version mailed to your home.  Neurology Now is an easy to understand publication which “provides patients with credible, up- to the minute, balanced coverage of the latest advances in neurology research and treatment.”  Subscriptions to Neurology Now are FREE to individuals with a neurological disorder.  Caregivers, family members and friends in the United States are also eligible to receive a free subscription.

The magazine was started in 2005 as a way of increasing patient education.  From Attention Deficit Hyperactivity Disorder (ADHD) to Traumatic Brain Injury, from migraines to Charcot-Marie-Tooth (CMT), one in six Americans is affected by a neurological disorder themselves or knows someone who is.   As any parent of a child with learning differences will confirm, having reliable information readily available is of great help when trying to get the most out of school services.

An additional benefit has been to help people feel less isolated.  “When living with a chronic disease, especially one with invisible symptoms,” explains Mike Smolinsky, Managing Editor, “it is important to form communities to share advice and experiences.”

So many people wanted to describe their experiences and share their stories.  In 2010, the AAN began the Neuro Film Festival.  The Neuro Film Festival is a contest to raise awareness through video about the need to support research into prevention, treatment and cure of brain diseases. Over 300 videos have been submitted since 2010 with this year’s Grand Prize being $1,000 and a trip to New Orleans.  

Neurology Now has something for everyone, including a photo series titled “Pictures of you.”  Look in the June-July 2012 issue to read a spotlight on Hereditary Neuropathy Foundation’s own Allison Moore.

Learn more on this topic

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My name is Elizabeth Francisco and I am a graduate student from the Genetic Counseling program at the University of North Carolina Greensboro. I am inviting you to participate in a research study. The goal of my study is to learn more about the experiences of people with Charcot-Marie-Tooth (CMT) with genetic counseling and genetic testing. Adults with CMT and parents or legal guardians of someone of any age who has a diagnosis of CMT are eligible to participate

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Quality of Life and CMT Research

Did you know that 95% of clinical trials fail? There are multiple causes, most related to efficacy or safety, which obviously can be harmful and risky for patients. The risk-reward of enrolling in trials is a judgment call based on the devastating effects of disease related to quality of life (QoL) or life-threatening disease. With CMT, the risk-reward is more of a challenging question for many, as CMT in most cases is non-fatal.

Help us answer questions that your doctors and the CMT Research Community aren’t too sure about.

Did you know that you can become part of a community in therapy development and further research for all forms of CMT and inherited neuropathies? The mission of the Global Registry for Inherited neuropathies (GRIN) is to collect clinical and genetic information from patients with ALL forms of Charcot-Marie-Tooth (CMT) and other related rare and ultra rare inherited neuropathies.

Hot off the press

It seems like almost weekly there is another new publication on CMT with interesting basic biology. While an earlier “Hot off the press” highlighted the work of Cherry and co-workers at the University of Texas Southwestern Medical Center who showed show that neurons lacking a gene for rab7 result in neuropathy.

New Study on CMT Type 2B

If we are to learn more about CMT and the effectiveness of rehabilitation it is worth asking the patient and their caregiver. A recent Italian study by Padua et al recently described a survey of CMT patients and caregivers and their perspectives and perceptions of rehabilitation efficacy and needs.

Allison Moore is going to be published!

HNF’s CSO (Chief Scientific Officer), Sean Ekins wrote a blog about his work with Allison Moore and her two “fighter Mom” friends Lori Sames and Jill Wood. He named his blog: “Rare disease heroes – Extraordinary collaborators we should be listening too.” Sean helped my friends and I write a paper called: “Multifaceted roles of ultra rare and rare disease patients/parents in drug discovery.” YES, Allison Moore is going to be published! It will be in Drug Discovery Today, soon. The link to the reprint is below.

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1 Comment

  1. Diane Sopich

    I have cmt, And would like to know if there are any new treatment.

    Reply

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