CMT Unseen: HNF Launches September Awareness Campaign to Spotlight Hidden Struggles of Charcot-Marie-Tooth Disease
Hereditary Neuropathy Foundation
CMT Unseen shines a light on invisible symptoms and unites the community to raise awareness, support research, and empower families.
NEW YORK, NY, UNITED STATES, August 29, 2025 /EINPresswire.com/ -- September marks Charcot-Marie-Tooth (CMT) Awareness Month, a powerful opportunity for the global CMT community to unite, raise awareness, and inspire action toward treatments and a cure. This year, the Hereditary Neuropathy Foundation (HNF) is proud to unveil its theme, CMT Unseen — shining a spotlight on the often-invisible symptoms of CMT and the behind-the-scenes efforts driving research, advocacy, and patient empowerment.
CMT is a progressive, inherited nerve disease that affects more than 3 million people worldwide. While some symptoms are visible, such as difficulty walking or muscle weakness, many challenges remain hidden — including chronic pain, fatigue, and emotional struggles. CMT Unseen aims to reveal these realities, foster empathy, and strengthen support for families living with the condition.
The #CMTUnseen Photo Challenge
Participants post a split photo highlighting “CMT Seen” (visible symptoms) and “CMT Unseen” (invisible struggles), while encouraging donations and awareness through hashtags #CMTUnseen #HNF4CMT #CMTAwarenessMonth #CMTweGotThis.
Facebook Frame & Poster
Supporters can update their profile photos with a custom twibbon and share HNF’s awareness poster to amplify visibility across social platforms. https://www.twibbonize.com/cmtunseen
CMT Gowns That Give
Donate gently used gowns and formalwear to support HNF’s mission while giving back sustainably. Goal: 1,000 gowns donated + $50,000 raised. Learn more at www.GownsthatGive.org.
CMT Readers Club
A nationwide storytelling initiative bringing disability-inclusive books into classrooms, encouraging empathy and awareness in the next generation. https://forms.gle/XPmh8aXfrLfXAMgYA
Join GRIN (Global Registry for Inherited Neuropathies)
Patients can accelerate research by sharing their story and completing ongoing surveys that inform clinical trials and treatments.
Start a Facebook Fundraiser
In just a few clicks, anyone can raise funds to fuel research, advocacy, and vital patient programs. https://www.hnf-cure.org/you-can-help/facebook-fundraiser/
Donate in Honor or Memory of a Loved One
Gifts — whether one-time or monthly — directly support research, education, and resources for families living with CMT.
Attend an Upcoming Event
Oct. 4, 2025 – The Nerve to Cure, Columbia, MO https://thenervetocure.givesmart.com/
Nov. 13, 2025 – Brews & Bingo, Phoenixville, PA http://weblink.donorperfect.com/BrewsandBingo
“This September, we invite everyone — patients, families, caregivers, and allies — to help shine a light on what’s unseen,” said Courtney Hollett, Executive Director, HNF. “Together, we can raise awareness, drive research forward, and bring hope to millions impacted by CMT.”
Visit www.hnf-cure.org to learn more, donate, and join the movement.
About the Hereditary Neuropathy Foundation (HNF)
HNF’s mission is to increase awareness and accurate diagnosis of Charcot-Marie-Tooth (CMT) and related inherited neuropathies, support people living with CMT and their families with critical information to improve quality of life, and fund research that will lead to treatments and cures. HNF’s Therapeutic Research in Accelerated Discovery (TRIAD) is a collaborative effort with academia, government, and industry to develop treatments for CMT. As part of TRIAD’s research consortium, the Global Registry for Inherited Neuropathies (GRIN) was established as a patient registry to collect and analyze patient-reported data and clinical scales, including the ONLS, CMT-FOM, CMTPedS, CMTInfS, Digital Health Technologies, and the collection and curation of genetic reports. The data have been instrumental in identifying the burden, diagnostic journey, and prevalence of CMT.
Allison T. Moore
Hereditary Neuropathy Foundation
+1 212-860-5405
email us here
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