In general, the collection, analysis and dissemination of data on disease progression and patient responses to long-term disease management strategies in registries represents a valuable way to improve understanding of the disease and keep medical professionals up to date on the latest advances.
Author Archive
Courtney
Curry Turkey Salad Sliders
Author: A Passionate Plate
Serves: 8 sliders
A great way to use up leftover holiday turkey. If hazelnuts are not available, use another nut of your choice, such as almonds, walnuts or pecans.
Make Ahead Mashed Potatoes
Author: A Passionate Plate Serves: 10-12
Ingredients
5 lbs. russet style potatoes, peeled and cut into 2″ chunks
8 oz. cream cheese, softened
1 cup sour cream
salt & pepper (white or black) to taste
4 Tbsp. butter
Turkey Chowder
cups each diced carrot, celery, onion and potato
3 Tbsp. olive oil
¼ cup flour
2 quarts chicken stock
1 lb. bag frozen corn
4 cups cooked turkey, diced
3 Tbsp. soy sauce
3 cups shredded cheddar cheese
1 can evaporated skim milk
1 tsp. crushed red pepper
2 Tbsp. fresh thyme, chopped
Holiday Cranberry Sauce
Author: A Passionate Plate
Serves: 7 half pint jars
SUPPLIES:
7 – ½ pint canning jars, lids and bands
Canning water bath pot, with rack, filled with 5 inches of water
Pumpkin Marble Cheesecake
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
Grace’s Courage Crusade Brunch 2013
A bright, crisp day greeted supporters of Grace’s Courage Crusade as they gathered to enjoy brunch by the beach with breathtaking views at the Atlantic Beach Club in Newport, RI. Following the amazing buffet spread, the crowd got intense over a dessert auction that offered tempting sweets and goodies provided by local businesses.
Bernadette Released
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.
Caramel Corn Chocolate Chip Cookies
“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!
Hot Off the Press
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.
Hot off the press
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.
Arclight Presents…BERNADETTE (NYR) September 17, 2013
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.
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