Blog Archive

Blog

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.

Allison Moore is going to be published!

HNF’s CSO (Chief Scientific Officer), Sean Ekins wrote a blog about his work with Allison Moore and her two “fighter Mom” friends Lori Sames and Jill Wood. He named his blog: “Rare disease heroes – Extraordinary collaborators we should be listening too.” Sean helped my friends and I write a paper called: “Multifaceted roles of ultra rare and rare disease patients/parents in drug discovery.” YES, Allison Moore is going to be published! It will be in Drug Discovery Today, soon. The link to the reprint is below.

Archives

Categories

Advocacy (7)
Awareness (34)
Centers of Excellence (13)
CMT (1)
CMT en Español (1)
CMT Summit (53)
CMT Update (74)
CMT-Connect (29)
CMT-Connect Webinars (10)
Webinars – Accessible Travel (3)
Webinars – Adaptive Driving (2)
Webinars – Bracing (1)
Webinars – Breathing (1)
Webinars – Canine Companions (1)
Webinars – Cannabis (3)
Webinars – Dating and Relationships (3)
Webinars – Family Planning (1)
Webinars – FEATURED (6)
Webinars – Genetic Testing (1)
Webinars – Home Accessibility (2)
Webinars – Inclusive Employment (3)
Webinars – Inspire Community (1)
Webinars – Legal Rights and Benefits (3)
Webinars – Newly Diagnosed (2)
Webinars – Nutrition (1)
Webinars – Pain (5)
Webinars – Podcasts (1)
Webinars – PT and Exercise (9)
Webinars – Research and Clinical Trials (9)
Webinars – School and College (4)
Webinars – Surgery (2)
Webinars – Telemedicine (1)
Webinars- Emotional and Mental Health (5)
Community (3)
Emerging Technologies (1)
Faces of CMT (1)
Faces of CMT – Addie (2)
Faces of CMT – Bernadette (9)
Faces of CMT – CMT4A (7)
Faces of CMT – Grace (18)
Faces of CMT – HELP Fund (8)
Faces of CMT – HNPP Fund (3)
Faces of CMT – James (1)
Faces of CMT – Jaxson (7)
Faces of CMT – Zach (18)
Featured (28)
GRIN Patient Registry (39)
HNF Team (10)
Industry (3)
Living with CMT (78)
Medical professionals (2)
Movement Is Medicine (17)
Optic Hereditary Neuropathy (5)
Our Impact (3)
Clinical Trials (21)
PFDD (1)
PFDD Meeting 28SEP2018 (5)
Past Events (35)
Patience Resources (0)
Accessible Travel (4)
Bracing (11)
Breathing (3)
Canine Companions (5)
Cannabis (8)
Caregivers (3)
Dating and Relationships (7)
Emotional and Mental Health (9)
Family Planning (1)
Fashion and Products (1)
Genetic Testing (11)
Home Accessibility (2)
Inclusive Employment (3)
Inspire Community (7)
Legal Rights and Benefits (8)
Neurotoxic Drugs (4)
Newly Diagnosed (7)
Nutrition (3)
Occupational Thearpy (2)
Pain (8)
Podiatry (4)
PT and Exercise (25)
Research and Critical Trials (29)
School & College (6)
Surgery (10)
Telemedicine (1)
Tips and Hacks (2)
Patient-Focused Research (1)
Pediatrics & CMT (10)
Registry (16)
Research (95)
School Outreach Program and Team CMT Kids (1)
Special Events (2)
Bike New York (19)
Other Events (4)
Spin-a-thon (7)
TCS New York City Marathon (7)
Team CMT Members (61)
The CMT Genie (6)
TRIAD (28)
TRIAD – Clinical Trial Readiness (5)
Vitaccess (1)
TRIAD – Research Gifts (0)
University of Helsinki (2)
Veneto (1)
TRIAD – Sponsored Research (0)
Burke Insitute (3)
University of Cambridge (1)
University of Miami (1)
University of San Antonio Texas (1)
TRIAD – Therapeutics (4)
Applied Therapeutics (10)
Pharnext (10)
Rarebase (4)
Types of CMT (1)
CMT Type – CMT1A (22)
CMT Type – CMT1B (2)
CMT Type – CMT1X (3)
CMT Type – CMT2A (9)
CMT Type – CMT2C (5)
CMT Type – CMT4A GDAP1 (3)
CMT Type – CNTNAP1 (1)
CMT Type – GAN (5)
CMT Type – HDAC6 (1)
CMT Type – HNPP (3)
CMT Type – MTRFR-C12orf65 (6)
CMT Type – SORD Deficiency (9)
Upcoming Events (3)
Ways to Give (4)