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Dear Members and Friends of the Hereditary Neuropathy Foundation:
This Christmas, as you pass along cherished holiday traditions to your children or grandchildren, ask yourself how you would feel knowing that you have also passed along a debilitating disease that may one day impede their ability to walk or use their hands.
This is the reality for thousands of individuals suffering with hereditary neuropathies, a group of genetic diseases that impair the motor, sensory and peripheral nerves of the hands and feet. That’s why we here at the Hereditary Neuropathy Foundation continue to work so tirelessly to provide hope, treatment, research and support to families afflicted with these diseases.
It’s hard to believe that we are in our fourth year at the Hereditary Neuropathy Foundation. Incredibly, in this short time, we have made major strides towards educating the public about hereditary neuropathy diseases, including CMT, the most common hereditary neuropathy.
Approaching the end of 2005, we are launching today a Fundraising Campaign - ending January 31st, 2006 - to help with our initiatives in the new Year. We encourage you to support our cause once again in 2006. To entice even more generous donations, Robert Moore, co-founder of HNF, has offered to match each of this campaign's donations dollar-for-dollar. (Remember, all donations are tax deductible for US-donors.)
Please inform your friends and any other people you know about this Campaign, even if they are outside of the CMT Community. Any support from anyone is greatly appreciated and much needed. Please send your friends at the web-based version of this letter, at www.hnf-cure.org/fundraising2005.
As usual, everyone who donates $35 or more receives an annual subscription to the HNF members' area, which allows members full access to all 160+ CMT-related articles on hnf-cure.org in addition to receiving a copy of "The Essential Guide to Hereditary Neuropathies" (see below).
In addition, this Holiday Season we are sending out for free a copy of Susan Wheeler's book "Aunt Scarlett's Farm" to everyone who donates $50 or more during the duration of the campaign. For more on the book please follow this link.
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To participate in our Fundraising Campaign please click here now.
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To subscribe for HNF full membership (Annual subscription, CMT Booklet, "Aunt Scarlett's Farm") FIRST CLICK HERE to register.
Below we include a rundown of some of our achievements throughout 2005 to show you that we’ve put your previous donations to extremely good use. As we move into 2006, we rely on you and all of our supporters to help us in our mission to improve the lives of so many wonderful people suffering from a family of little-known yet truly devastating diseases.
We thank you for your donation and wish you and your family a safe and healthy holiday season.
Sincerely,
Allison T. Moore
President HNF
A YEAR IN REVIEW
2005 Highlights and Achievements
 We Merged with CMTWorld.org
First and foremost, we completed a successful merger between HNF and CMTWorld, and, in the process, increased our membership, reach and power. Now more than 4,000 members strong, we are better able to promote awareness and disseminate medical research and support to a large and targeted constituency of the people who need it most.
We Partnered with CMTUS
We partnered with a California-based CMT on-line group called CMTUS to focus on family issues related to CMT. Gretchen Glick, founder of this successful website housing, comes on-board with over 800 patients.
We Published & Raised Awareness
 We published "The Essential Guide To Hereditary Neuropathies", a handbook people are calling “an indispensable guide” that answers important questions about diagnosing and coping with CMT. What is more, through our media efforts, we garnered extensive press coverage, totaling more than 25 feature articles. Switching gears, executive director Susan Wheeler, Dick Sharpe, Bill Watson and I encouraged two New York representatives on Capitol Hill to support our fundraising and awareness initiatives. Finally, Ms. Wheeler is speaking at conferences across the country about CMT.
 We Created an Amazing Website
Showcasing now more than 160 articles specific to CMT, as well as a host of interactive web-based features - including an on-line library of CMT-related Questions and Answers and our popular on-line Forums - our new website offers the most comprehensive HN information currently available on the Internet. In June, we restructured the format of the website into two units, one free and one paid. The site allows both (no cost) public access to important fundamental information about CMT and a more comprehensive section reserved for paying members. This transition has provided a steady growth of donations and strong member interest, truly a huge help as we move forward.
We launched a new initiative for Children with CMT
In an effort to help the youngest CMT patients, we recently launched a new on-line forum specifically for children and their families. The new Forum - accessible from everyone at no cost just like all other HNF on-line Forums at www.hnf-cure.org/forums - focuses on children and family issues related to CMT. Gretchen Glick will be moderating our newest web initiative.
ON THE HORIZON
We Are Inspiring and Educating the Medical Community
We are developing an online educational course to teach doctors how to spot and diagnose CMT and other hereditary neuropathies. To date, no such program exists, and physicians frequently misdiagnose these diseases that they never learned about in medical school. We are pursuing partnerships that would enable CME accreditation as well as funding for the implementation of this groundbreaking project.
We Are Pushing for Life-Enhancing Leg Braces
While treatments for CMT and other neuropathies are limited, "bracing" is a well established means to improve walking ability and stability. The right braces could help more than 20 million Americans who suffer from peripheral neuropathies. Our Organization's President, Allison Moore struggled with frequent falls and limping before she tried the revolutionary new Helios brace. Therefore, she is spearheading a new initiative to secure a National Institute of Health grant in scientific study comparing the Helios to a traditional AFO. Another goal is to reduce the high cost—$11,000 - $13,000 per pair, with little reimbursement from Medicare and private insurers and to help combat the resistance to bracing due to vanity, non-acceptance and emotional issues.
We Are Fighting for Early Intervention for Children
Sadly, research studies establishing the benefits of early intervention with children and CMT is limited. We are determined to promote new research and development that will help the youngest CMT patients before their symptoms progress. Our partnership with CMTUS and the recent launch of a new on-line Forum for children with CMT and their parents will further strengthen our efforts towards this direction.
Dear Subscriber:
You have received this message as a valued member of the Hereditary Neuropathy Foundation exclusive Mailing List. Our intention is to inform, not to annoy. If for any reason you would prefer not to receive our emails, you can unsubscribe using the links at the bottom of this page.
HNF-cure.org is an Internet web site with a goal to finding a cure for CMT and to providing support to CMT and other hereditary neuropathies patients and their families. For more information please visit our website at www.hnf-cure.org.
This publication may be freely redistributed if copied in its ENTIRETY.
(c) Copyright 2005 Hereditary Neuropathy Foundation
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