As a little girl, Estela Lugo now 32, always knew she would do “something with art” when she grew up. “I was drawing, always drawing,” she remembers.
Author Archive
Courtney
Dr. Robert Baloh Answers Our Questions About iPS Cell Research
Big news is happening on a cellular level at Cedars-Sinai Medical Center’s Regenerative Medicine Institute in Los Angeles, CA. Robert H. Baloh, MD PhD, Director of Neuromuscular Medicine, in conjunction with Patrick D. Lyden, MD Neurology Dept. Chair, and Clive Svendsen, PhD, Institute Director, are studying disorders that start in nerve cells.
March 2013: Arlene sequel available!
Arlene, the Rebel Queen will be available in March! You can get a copy on Amazon, Barnes and Noble, or most other retailers and wholesalers.
HNF Signs Coalition Letter to Congress
On November 1, CMS announced in the 2013 Medicare Physician Fee Schedule that it will severely reduce payment for EMG and NCS.
Running for Three Generations with CMT
These days, inspired by his love of family he runs on behalf of three generations of women with Charcot-Marie-Tooth disease
Grace’s Courage Crusade Brunch 2012
Warm temperatures and brilliant sunshine welcomed several hundred guests attending Grace’s Courage Crusade this year
Arlene On the Scene: Barrington Books Fall Festival
Together, she and Carol answered questions from young and old alike about Charcot-Marie-Tooth (CMT). “The festival was such a nice opportunity to let kids know about Arlene and raise awareness about CMT,”
Arlene On the Scene Sequel!
Coming in March 2013, the sequel to parent and teacher favorite, Arlene On the Scene will be on the shelves!
Joe Torello, Music Man
While running the Philly Half-Marathon, Joe will be raising funds for the Hereditary Neuropathy Foundation (HNF). So far, he has raised $ 1105.00 through private donations and hopes to gain corporate sponsors as well.
Camp CMT: Great Opportunity for Children with CMT!
Arrangements are being made to allow HNF to invite families impacted by Charcot-Marie-Tooth for a weekend, in 2013, to Camp Twin Lakes.
Spin / Yoga for a Cure: Thursday September 27th Hot Ryde Roslyn, New York
The Hereditary Neuropathy Foundation (HNF) “Spin/Yoga for a Cure” will be held Thursday, September 27, 2012.
Women’s Group Blog for CMT Awareness: The Fab Five
The women: Lenka Vodicka of California, Michele Kekac of Connecticut, Esther Lejbovitz of New York and Nicole Burggraaf of Cananda, post to the site whenever they feel they have something to share.
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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)
Featured (30)
GRIN Patient Registry (39)
HNF Team (10)
Industry (5)
Living with CMT (78)
Media (1)
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)
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)
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Inspire Community (7)
Legal Rights and Benefits (8)
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Newly Diagnosed (7)
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Occupational Thearpy (2)
Pain (8)
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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)
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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)
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