Total posts in Category: 36
Author: A Passionate Plate – from Ray’s Boathouse Seafood Secrets of the Northwest cookbook
Serves: 12
You will need a 9″ springform pan, foil and a large roasting or baking pan for this recipe. The recipe is not hard to make, but cooking time is nearly 2 hours, so be sure allow plenty of time in the kitchen.
Ingredients
On Tuesday, September 17th 2013, the world changed for the better – just a little bit. It was the day that Bernadette, the first full-length documentary on Charcot Marie Tooth disease, was released. Not only that, but it kicked of with a very special premiere at the ArcLight Cinemas Theatre in Hollywood.
“Sometimes me think ‘what is a friend?’ and then me think… friend is what last chocolate cookie is for.” You know the voice – it’s Cookie Monster, one of my favorite Sesame Street characters. “Me want cookie! Me eat cookie!
Research on CMT is global, and covers both laboratory and clinical studies. It is therefore critically important to realize we should be aware of what is happening elsewhere as well as in the USA because it can have implications for what we do and fund.
Some recent papers on Charcot-Marie-Tooth (CMT) disease go to show that we are steadily and impressively peeling back the complexity of the biology even though it is a relatively common rare disease with several thousand publications on it.
Cast: Bernadette Scarduzio
Bernadette Scarduzio was born with the most common inherited disease that no one has ever heard of: Charcot Marie Tooth (CMT) syndrome. CMT is the number one hereditary neuropathy in the world, affecting 1 in 2,500 people or nearly 2.6 million worldwide.
At HNF we have dedicated our lives to raising awareness about CMT, so we’d like to spend the month sharing what we’ve learned
The clinical Global Registry for Inherited Neuropathy (GRIN) and the Rare Disease Clinical Research Network (RDCRN) contact registry are very different types of databases.
Joe is an active member of Team CMT and we appreciate all he does for HNF. He has been busy performing, raising awareness and exercising for a cure! While Joe was performing The Music Man at Philadelphia’s Walnut St. Theatre
On Wednesday, January 29th, jewelry designer jaKe & anna will be sponsoring the NYC premiere of BERNADETTE at the old time soho Angelika Film Center in Manhattan. 50% of sales from this viewing will go to the Hereditary Neuropathy Foundation (HNF).
The Hereditary Neuropathy Foundation (HNF) has been chosen as the Charity Partner for the MetroTex Charitable Trust Run for Fun.
HNF is thrilled to have been chosen for the 4rd year as a Charity Partner for the TD Bank Five Boro Bike Tour
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