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
Author Archive
Courtney
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.
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.
September is CMT Awareness Month – Help HNF Spread the Word
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
Dr. Sean Ekins named C.S.O. of HNF
We are delighted to announce that after volunteering for HNF for the past year Dr. Sean Ekins, Ph.D, D.Sc. will officially become our CSO responsible for overseeing the TRIAD program, directing our scientific advisory board, and communicating our research initiatives to the scientific community. In addition he serves as the Principal Investigator of the clinical Global Registry for Inherited Neuropathy (GRIN).
The clinical Global Registry for Inherited Neuropathy (GRIN) and the Rare Disease Clinical Research Network (RDCRN) contact registry are very different types of databases.
The clinical Global Registry for Inherited Neuropathy (GRIN) and the Rare Disease Clinical Research Network (RDCRN) contact registry are very different types of databases.
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Webinars – Inclusive Employment (3)
Webinars – Inspire Community (1)
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Webinars – Nutrition (3)
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Faces of CMT – HNPP Fund (3)
Faces of CMT – James (1)
Faces of CMT – Jaxson (7)
Faces of CMT – Zach (18)
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GRIN Patient Registry (39)
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Industry (5)
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Medical professionals (2)
Movement Is Medicine (17)
Optic Hereditary Neuropathy (5)
Our Impact (3)
Clinical Trials (22)
PFDD (1)
PFDD Meeting 28SEP2018 (5)
Past Events (35)
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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 (4)
Occupational Thearpy (2)
Pain (8)
Podcasts (2)
Podiatry (4)
PT and Exercise (25)
Research and Critical Trials (33)
School & College (6)
Surgery (10)
Telemedicine (1)
Tips and Hacks (2)
Patient-Focused Research (1)
Pediatrics & CMT (10)
Registry (16)
Research (96)
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 (29)
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 (2)
Ways to Give (4)
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