Kuddos to our Inspire member HMBSusan! She initiated this important conversation in our Inspire Support Community. When HNF partnered with the Inspire Community, our mission was to encourage conversations just like this one.
The Hereditary Neuropathy Foundation (HNF) is thrilled to participate as a Charity Partner for the 2016 TD Bank Five Boro Bike Tour for the fifth year in a row. This is an extraordinary event where participants bike through all five New York boroughs to help increase awareness and raise dollars to fund Charcot-Marie-Tooth (CMT) research.
Want more control over your health information? Medicare is providing better access to your health information with their expanded Blue Button feature. The Blue Button makes it easy to download your health information into a file on your personal computer.
The Hereditary Neuropathy Foundation is proud and excited to kick off the charitable season with #GivingTuesday on December 1st. #GivingTuesday unites people across the world by sharing our capacity to care for and empower each other.
Why are we asking you to join our registry? It’s simple. Without you, researchers won’t have the essential patient information to develop the drugs, gene therapy, and clinical trials for Charcot-Marie-Tooth and other inherited neuropathies.
This is why the Hereditary Neuropathy Foundation (HNF) created the Global Registry for Inherited Neuropathies (GRIN). The registry collects the historical, clinical, and genetic information on patients diagnosed with the various forms of inherited neuropathies to help advance therapy development for these debilitating disorders. We understand there may be some hesitation joining our registry. To help mitigate any concerns, we’ve have the answers to your most common questions.
The holiday season is upon us!
The season brings family, friends, and community together to celebrate and share the many holiday traditions across cultures and religions. While the holidays should be a time of joy and celebration, it can also be a time of increased physical and emotional stress. Traveling, dietary challenges, family issues, and financial stress can make the season difficult for even the most holiday hearty among us.
Being mindful of managing these additional stresses during the holidays is especially important for those living with Charcot-Marie-Tooth. CMT patients face those holidays challenges with the additional daily stress of living with a progressive neuropathy.
With proper planning and preparation, CMT patients can give themselves the best opportunity to stay healthy and happy this holiday season.
Here are a few helpful holiday tips ->
Individuals affected with neuropathic diseases, such as CMT, may be more vulnerable to the effects of certain medical conditions, stresses, and medications. A small number of medications are known to cause damage to nerves or cause neuropathy. These drugs can act as neurotoxins: substances that are poisonous or destructive to nerve tissue. Neurotoxic drugs can cause a loss of muscle control and/or nerve sensation.
Kristin is redefining what it’s like to live with Charcot-Marie-Tooth disease. Determined to be seen for who she is, rather than her disability, Kristin faces the daily challenges of CMT head on with grace, dignity, and perseverance.
Kristin’s story not only shows us how she is redefining herself, but how she is giving others living with CMT the courage to do the same. Let’s learn more about Kristin and how she’s breaking down the barriers of CMT.
From “hot yoga” to paddleboard yoga, mantra chanting to meditation, the ancient spiritual practice of yoga has exploded into a wide range of styles and disciplines in Western culture. It’s hard not to pass by a yoga studio in your town, or hear about the latest celebrity to take up the popular practice.
Awareness FBWhile Charcot-Marie-Tooth Awareness Month officially comes to an end today, the Hereditary Neuropathy Foundation’s commitment to spreading CMT awareness carries on every single day of the year.