Grace’s Courage Crusade, a passionate campaign of the Sidoti/Caldarone family to raise awareness and fund CMT research, held its annual “Brunch by the Beach” fundraiser in scenic Newport, RI on November 2, 2014.
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Faces of CMT
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Perception Shift
Throughout my life many different people have impacted my views on certain things, whether it be how I speak, how I dress, what I eat or even who I’m friends with. I now consider my viewpoint on life much more mature and sophisticated than it was 10 years ago or even 5 years ago. I think more logically than ever before and I am much wiser now because of my mistakes and because of my success. Recently in my life I met another person who greatly impacted my life.
Sunday, November 2, 2014: Grace’s Courage Crusade Brunch
This year our Chief Science Officer, Sean Ekins, will attend the event and provide an update on the exciting research HNF has funded, thanks to the generosity of Grace’s Courage Crusade!
Arlene is Teaching Tolerance “Staff Pick”
Arlene On the Scene was recently named “Staff Pick” by Teaching Tolerance, an amazing organization dedicated to reducing prejudice, improving intergroup relations and supporting equitable school experiences for our nation’s children.
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.
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.
Another Successful Year Spreading CMT Awareness
Forty-six schools, eight states, 6600 students. The third year of the Hereditary Neuropathy Foundation’s School Outreach Program was our best yet! From the authors’ home state of Rhode Island, to our current home in New York, and on out to Chicago, Philadelphia, Washington, DC and Dallas, we met our goal of reaching more students, teachers and parents than ever.
Talking With Classmates about CMT
Older sister Erin, who also lives with Charcot-Marie-Tooth, pitched in along with mom, Monica Hughes. With a polished powerpoint show that included pictures and videos, plus doughnuts at the end, Miah’s classmates were engaged and ready to understand!
Team CMT Kids Goes the Distance!
The biggest Team CMT Kids event of the year featured a group of youth triathletes going the distance to support those who live with Charcot-Marie-Tooth disease.
School Outreach Program Spreads Its Message Nationwide
From Narragansett to Quidnessett, Coventry to Providence, Warwick to Johnston, we met amazing students at every school. We even ventured into southern Massachusetts, to Braintree and Arlington.
BERNADETTE SCARDUZIO: The Face of Charcot-Marie-Tooth Disease
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
School Outreach Program Update
HNF’s School Outreach Program is having its best year yet, with nearly fifty schools visited in 2012-2013
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Advocacy (7)
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CMT (2)
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Awareness (34)
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CMT (2)
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 (4)
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)
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