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Dear Supporter,  

AllisonNow that the holidays are winding down, it's back to work for us all. As we approach the warm weather, I reflect on the past 6 months: The cold winter, the Newtown, CT. school killings, and horrible suffering because of war, hunger, and poverty. All we can do is unite and pray for peace and blessings.


For me personally there have been many challenges: Last year breaking my foot in five places, being confined to a wheelchair for almost 3 months, and the most challenging of all, the death of my father. Although these experiences have been heavy on my heart and are affecting me physically and emotionally, I have been able to stay strong as my father would expect and continue to move forward in my personal quest to find a cure for CMT. 


As always, we rely on your support to help us in our mission to find a cure. Please support us by making a donation, joining us by riding in Bike NY Tour, sharing our research with your friends and family on Facebook, Twitter, the CMT Inspired Community and any other way to spread the word.


Thank you!

Allison Moore

HNF wins Assay Depot And Rare Genomics Awards
In recognition of Rare Disease Day, Assay Depot and Rare Genomics Institute (RGI) recentlly announced the winners of the first ever Rare Disease Science Challenge: BeHEARD (Helping Empower and Accelerate Research Discoveries). In total, more than $500,000 worth of research services will be awarded to study 26 different rare diseases. ranging from Alkaptonuria to X-linked intellectual disability (XLID). In addition, 10 finalists have been selected for a $10,000 cash prize and the final winner will be determined by online public votingRead More

Rare Disease Clinical Research Network launches new study!


Is CMT affecting the quality of your life? By participating in the RDCRN study you can help us in our mission as we promote Dr. David Hermann at University of Rochester research. Studies like this will help the CMT community with publication, funding and ultimately guidelines that will help in later studies and clinical trials to determine the benefits of potential therapies. Read More


No Bake Banana-Peanut Butter Granola Bars

Author: A Passionate Plate 

Recipe type: Snack

Serves: 8


I've been on a banana kick lately. I just can't get enough of them. Does that ever happen to you? I. Crave. Bananas! Banana bread. Vana-rama Smoothie. Banana and Greek Yogurt. So, when I discovered Nothing But Banana, Flattened at Trader Joe's last week I just knew I'd have fun creating something yummy with it. Read More 

Hot Off the Press Bernadette Scarduzio is featured in I.D.E.A.L. Magazine by Debroah A. Pierro
Bernadette Scarduzio In mid-October 2012, I had the opportunity to interview Bernadette Scarduzio (Bern). She is a lovely young woman who suffers from Charcot-Marie-Tooth (CMT), an inherited disease that can be passed from generation to generation. CMT is a degenerative disease that slowly causes deterioration of the nerves and muscles over time, and there is no cure. Bern's father had been taking care of her, but he passed away from a massive heart attack on December 20, 2008. He also had CMT, as did his own father and most of his father's nine brothers and sisters. Read More

CMT is the unsolvable problem I carry in my heart.  I didn't even know how to pronounce it when I first heard of it. The first time I heard the words "Charcot-Marie-Tooth" was when my sister emailed me her daughters were diagnosed with the condition. When I went to the web and read the symptoms I knew I had it too. Read More
In This Issue

 The only thing Sarah Clauss has given up because of Charcot-Marie-Tooth (CMT) is waterskiing. "I live on the lake so I attempted waterskiing but...," jokes the 25 year old, Lake Wallenpaupack, Pennsylvania resident, "it wasn't pretty." Instead she enjoys boating and swimming. Read More 

World Orphan Drug Congress USA
April 9th - 11th Washington, DC
HNF Charity Partner: TD Five Boro Bike Tour
May 5th - New York, NY
8th Annual Golf Outing
The Dick Sharpe Memorial Golf Outing.
Thursday, September 26th
Port Washington, NY

Canine Companions Four Legged Word

Sunday April 21 - Dallas, TX

Q&A with Abby Ziff, Sales Director, Strategic Accounts, WebMD

You don't have CMT nor does anyone in your family so why are you such a strong advocate?

I first learned about CMT last year when I heard Allison Moore's story and it is because I don't have the disease, nor does anyone in my family that I can objectively champion this cause.

Read More
HNF's School Outreach Program is having its best year yet, with nearly fifty schools visited across the U.S. in 2012-2013. Learn More
Join the #Charcot-Marie-Tooth Inspire Community and get updated info on CMT! It's free!

Quest's Athena Diagnostics Launches NGS Panel Test for #Charcot-Marie-Tooth Disease