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Dear Supporter,  

AllisonAs we enter into the month of July with lots of sunshine, warmth and the winding down from a busy 4th of July, we can all think about the traditional birthstone of the month: ruby. The traditional metaphysical properties for ruby are vitality, strength, and confidence. These are all things that many of us strive for in our daily lives. But when it comes to living with a progressive neurological disease, achieving this can be challenging.  On our so-called "bad days," we may feel despair, anger, and frustration. We need to dig deep and seek ways to overcome these feelings.   I find that by channeling my efforts into supporting a cause, I can regain vitality, strength and the confidence that one day there will be a cure for our diseases. I also firmly believe that through unity, by joining with one another as one single community with one powerful voice, we can achieve these goals. Join us today and take one of these calls of action. 
 
1. Join the Global Registry for Inherited Neuropathy
2. Like us on Facebook
3. Join our Inspire Community
  
Best always,
Allison Moore

 

TRIAD 
 

The clinical Global Registry for Inherited Neuropathy (GRIN) and the Rare Disease Clinical Research Network (RDCRN) contact registry are very different types of databases. 

 

As a contact registry, the RDCRN collects limited data on patients with CMT.  For example, the RDCRN allows registrants to specify one of five types of CMT; if a registrant does not have one of these types, he/she is categorized as "other known" and "other unknown." Additional clinical information is not collected in a contact registry such as the RDCRN.

 

The GRIN, however, is a clinical registry. It collects detailed clinical information on registrants that can be entered remotely, allowing the inclusion of clinical information on patients who have not been seen in a CMT Center. This includes a registrant's specific type of CMT, genetic information, and the range and severity of symptoms experienced. Because this information can be uploaded electronically, the GRIN eliminates the need for costly travel for in-person clinical assessments at one of a few centers. Imagine being able to run a query and get a listing of registrants with CMT1A  who also experience tremors? Or identify those with CMT2A who also have breathing difficulties? This is the kind of detailed clinical information that can inform researchers and provide patient information that is necessary for clinical trials. Read more

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Another Successful Year Spreading CMT Awareness

 

Forty-six schools, eight states, 6600 students. The third year of theHereditary Neuropathy Foundation's School Outreach Program was our best yet! From the authors' home state of Rhode Island, to our current home in New York, and on out to Chicago, Philadelphia, Washington, DC and Dallas, we met our goal of reaching more students, teachers and parents than ever.

Our school presentations deepen understanding of disability as difference, something that can be embraced rather than merely tolerated or accepted. With our sequel, Arlene, the Rebel Queen, we added the powerful message that every young person has the potential to change the world. In fact, perhaps the young are best suited to lead us to change! With the addition of our Team CMT Kids program, we provide the opportunity for students to join with us in our mission to one day cure Charcot-Marie-Tooth (CMT). Be sure to check out our new video below of highlights from this year's presentation. Read More

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Strawberry Pistachio Semifreddo

 

Author: Martha Stewart           

Recipe type:   Dessert

Serves: 12

 

One of my favorite summer-time treats is homemade ice cream. I remember watching my mom standing over a simmering pot of custard, surrounded by a pile of just peeled Michigan peaches. Meanwhile, my dad was getting the ice cream maker set-up out on the porch. That ice cream maker was quite an impressive machine: a wooden bucket containing a stainless steel bowl with motorized paddle. He filled the wooden bucket with ice and topped it with salt over and over, again to eventually freeze the custard mixture. Click here for recipe

 

     

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Look how we have grown!

 

The Hereditary Neuropathy Inspire Community has grown to 852 and counting. We are ecstatic with all the interactions that our members post each day. Our goal was to create a community where patients and family members could support each other,  to see such a success over this past year is humbling to us.  

 

 

 

  # of members joined in 2013              # of members joined in 2012

 

March: 38 members
March: 23 members
April: 38 members
April:19 members
May: 40 members
May:16 members
June: 43 members
June: 19 members
   
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SAVE THE DATE! "Hereditary Neuropathies" Facebook Chat on July 24th  

 

The Neuropathy Association and the Hereditary Neuropathy Foundation To Co-Host the "Hereditary Neuropathies" Facebook Chat On July 24th! 

The Neuropathy Association and the Hereditary Neuropathy Foundation are pleased to announce that we will be co-hosting a Facebook Chat on July 24th that focuses on better understanding the diagnosis, care and treatment of hereditary neuropathies. Click here for the details!

 

FACEBOOK CHAT: "Hereditary Neuropathies"
WHEN: July 24th, 2013 (7:00 pm - 8:30 pm ET)
WHERE: www.facebook.com/NeuropathyAssociation

GUEST HOSTS: Robert H. Baloh, MD, PhD; Jared Gollob, MD; Glenn B. Pfeffer, MD. Read more

 

 

     

In This Issue
 

  


8th Annual Golf Outing

The Dick Sharpe Memorial Golf Outing.

Thursday, September 26th

Port Washington, NY

More Info

 

Grace's Courage Crusade Brunch

November 3, 2013

Newport, RI

More Info

 

Card Party Brunch and Boutique

January 31, 2014 

Boca Raton, Fl

More Info

 

MetroTex Charitable Trust Run For Fun

May 3, 2014

Irving, Texas

More Info

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Today, CMT is no longer considered a single disease, but a collection of hereditary peripheral neuropathies resulting from pathogenic mutations Learn More
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doctor    
Q & A with CEO Kyle Brown, Crossroads
 
Why do we need a registry? 
 

There is a huge reason to have a registry.  How can you expect investments of millions of dollars without information? Raising visibility of any disorder to doctors and scientists is essential.  For one thing, it encourages areas of research for scientists to go into.  Raising awareness and presenting a cohesive front creates a community.  It says "we are all willing to do whatever you need to help.  We are willing to participate." Read More 

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RT @AllisonTMoore: For Severe Charcot-Marie-Tooth Disease, a Neurological Disorder, Surgery Can Change Lives newswise.com/articles/for-s...
  
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