Mitochondria are the powerhouses of our cells. Think of them as our body’s batteries. Mitochondrial disease causes these batteries to run low.
Blog Category
Faces of CMT – Zach
Total posts in Category: 18
Cambridge-led natural history study identifies MTRFR/C12orf65 deficiency to improve diagnosis and therapy development
This research will potentially show a method that may be quicker and better at identifying...
The Houliares Family Takes on CMT6
We have two choices in this world. We can sit back and do nothing, allowing this disease to happen, or we can go out and fight to make a difference.
Battersby Lab Donor Story: Fighter Moms Donate to Vital Research into Mitochondrial Diseases
Battersby Lab Donor Story Fighter Moms Donate to Vital Research into Mitochondrial Diseases
Meet Bosco
Meet Bosco, Zach Houliares service dog. Learn more about how service dogs can help those living with CMT!
HNF tackles the hidden mysteries behind the genetic diagnosis of CMT mitochondrial diseases
C12orf65 gene, a rare form of CMT also known as Leigh Syndrome is robbing young children of a normal life even beyond the classic CMT symptoms.
CMT6 (c12orf65) “One gene, two diseases”
C12orf65 can present as two different types of diseases called CMT6 and Leigh’s Syndrome. Both diseases are caused by dysfunction of mitochondria, the energy factory of our cells, and are progressive and, many times, devastating.
Chrome Divas Host Another Successful CMT6 Event
On September 9th, The Rochester Chrome Divas hosted a Scavenger Hunt to raise money for CMT6 research.
Scavenger Hunt Motorcycle Event for CMT6: A Success
The Rochester Chrome Divas hosted a Scavenger in the Finger Lakes of NY on September 9th. Mother nature provided us a sunny cool fall day for the ride.
Scavenger Hunt Victor, New York: September 9, 2017
Scavenger hunt September 9th, 2017
Summit Panelist Spotlight: Debi Houliares
When Debi’s son Zach was first diagnosed with CMT Type 6 in 2014, after 14 years of doctors trying to figure it out, she couldn’t believe there was a disease out there that no one has ever heard of.
A Night To Remember: First Casino Night Event For CMT6
On Thursday April 21, 2016, over 160 Zach supporters gathered for the 1st Casino Night to benefit CMT6!
Categories
Advocacy (7)
Awareness (32)
Centers of Excellence (13)
CMT en Español (1)
CMT Summit (50)
CMT Update (73)
CMT-Connect (30)
CMT-Connect Webinars (9)
Webinars – Accessible Travel (3)
Webinars – Adaptive Driving (2)
Webinars – Bracing (2)
Webinars – Breathing (1)
Webinars – Canine Companions (1)
Webinars – Cannabis (2)
Webinars – Dating and Relationships (3)
Webinars – Family Planning (1)
Webinars – FEATURED (7)
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 (4)
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 – UPCOMING (1)
Webinars- Emotional and Mental Health (5)
Community (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 (22)
GRIN Patient Registry (30)
HNF Team (10)
Industry (2)
Living with CMT (75)
Medical professionals (2)
Movement Is Medicine (16)
Optic Hereditary Neuropathy (5)
Our Impact (1)
Clinical Trials (15)
PFDD (1)
PFDD Meeting 28SEP2018 (5)
Past Events (35)
Patience Resources (0)
Accessible Travel (4)
Bracing (12)
Breathing (3)
Canine Companions (5)
Cannabis (7)
Caregivers (3)
Dating and Relationships (7)
Emotional and Mental Health (8)
Family Planning (1)
Fashion and Products (1)
Genetic Testing (9)
Home Accessibility (2)
Inclusive Employment (3)
Inspire Community (7)
Legal Rights and Benefits (8)
Neurotoxic Drugs (4)
Newly Diagnosed (8)
Nutrition (3)
Occupational Thearpy (2)
Pain (6)
Podiatry (4)
PT and Exercise (24)
Research and Critical Trials (20)
School & College (6)
Surgery (10)
Telemedicine (1)
Tips and Hacks (2)
Patient-Focused Research (1)
Pediatrics & CMT (7)
Registry (10)
Research (83)
School Outreach Program and Team CMT Kids (1)
Special Events (1)
Bike New York (18)
Other Events (3)
Spin-a-thon (7)
TCS New York City Marathon (7)
Team CMT Members (58)
The CMT Genie (3)
TRIAD (23)
TRIAD – Clinical Trial Readiness (1)
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 (3)
Applied Therapeutics (8)
Pharnext (10)
Rarebase (4)
Types of CMT (0)
CMT Type – CMT1A (19)
CMT Type – CMT2A (6)
CMT Type – CMT2C (3)
CMT Type – CMT4A GDAP1 (2)
CMT Type – GAN (4)
CMT Type – HNPP (2)
CMT Type – MTRFR-C12orf65 (4)
CMT Type – SORD Deficiency (6)
Upcoming Events (2)
Ways to Give (4)
Awareness (32)
Centers of Excellence (13)
CMT en Español (1)
CMT Summit (50)
CMT Update (73)
CMT-Connect (30)
CMT-Connect Webinars (9)
Webinars – Accessible Travel (3)
Webinars – Adaptive Driving (2)
Webinars – Bracing (2)
Webinars – Breathing (1)
Webinars – Canine Companions (1)
Webinars – Cannabis (2)
Webinars – Dating and Relationships (3)
Webinars – Family Planning (1)
Webinars – FEATURED (7)
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 (4)
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 – UPCOMING (1)
Webinars- Emotional and Mental Health (5)
Community (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 (22)
GRIN Patient Registry (30)
HNF Team (10)
Industry (2)
Living with CMT (75)
Medical professionals (2)
Movement Is Medicine (16)
Optic Hereditary Neuropathy (5)
Our Impact (1)
Clinical Trials (15)
PFDD (1)
PFDD Meeting 28SEP2018 (5)
Past Events (35)
Patience Resources (0)
Accessible Travel (4)
Bracing (12)
Breathing (3)
Canine Companions (5)
Cannabis (7)
Caregivers (3)
Dating and Relationships (7)
Emotional and Mental Health (8)
Family Planning (1)
Fashion and Products (1)
Genetic Testing (9)
Home Accessibility (2)
Inclusive Employment (3)
Inspire Community (7)
Legal Rights and Benefits (8)
Neurotoxic Drugs (4)
Newly Diagnosed (8)
Nutrition (3)
Occupational Thearpy (2)
Pain (6)
Podiatry (4)
PT and Exercise (24)
Research and Critical Trials (20)
School & College (6)
Surgery (10)
Telemedicine (1)
Tips and Hacks (2)
Patient-Focused Research (1)
Pediatrics & CMT (7)
Registry (10)
Research (83)
School Outreach Program and Team CMT Kids (1)
Special Events (1)
Bike New York (18)
Other Events (3)
Spin-a-thon (7)
TCS New York City Marathon (7)
Team CMT Members (58)
The CMT Genie (3)
TRIAD (23)
TRIAD – Clinical Trial Readiness (1)
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 (3)
Applied Therapeutics (8)
Pharnext (10)
Rarebase (4)
Types of CMT (0)
CMT Type – CMT1A (19)
CMT Type – CMT2A (6)
CMT Type – CMT2C (3)
CMT Type – CMT4A GDAP1 (2)
CMT Type – GAN (4)
CMT Type – HNPP (2)
CMT Type – MTRFR-C12orf65 (4)
CMT Type – SORD Deficiency (6)
Upcoming Events (2)
Ways to Give (4)
Recent Comments