CATEGORIES: CMT Update

Setting Sail For CMT: Manhattan Cruise Successfully Raises Research Funds

by | Jul 31, 2017 | 0 comments

Anchor’s aweigh! On Saturday, June 17th, HNF cast off for our maiden voyage New York City sunset cruise, sharing with our guests an amazing night filled with food, drinks, music, and exclusive auction items. The scenery was picturesque as we viewed the stunning city skyline and passed by sights such as the Statue of Liberty and Freedom Tower. Guests mingled on the yacht’s three decks while dining and dancing, plus had everyone had an opportunity to bid on unique silent auction items. One guest that joined us summed up the evening in this way:

“It was a breath of fresh air to be among so many wonderful people. I can’t express enough how fortunate I am to be a part of HNF and Team CMT.” – Richard Barreto making a Mt.Kilimanjaro climb in July 2017 to support CMT research.

– Richard Barreto making a Mt.Kilimanjaro climb in July 2017 to support CMT research

Thanks all who joined us, this special evening raised $23,000 for HNF’s work! All proceeds will go towards the Therapeutic Research in Accelerated Discovery (TRIAD) program, a collaborative effort with academia, government and industry, to develop treatments for Charcot-Marie-Tooth (CMT).

We are so happy that so many people with CMT, family members, and friends came out with us to support CMT research and HNF. We are grateful for their generosity, and we look forward to bringing future news of TRIAD’s successes funded by their donations.

Mark your calendars and plan to join us next year! We will be setting a course for another New York Skyline cruise during CMT Awareness Month in September 2018. Keep a sharp lookout for more details!

Learn more on this topic

Related Blog Posts

Breaking News: First Therapeutic Gene Therapy to Treat an Inherited Neuropathy is Approved for Clinical Trial!

by | Mar 6, 2015 | , , | 9 Comments

The first disease community to receive a therapeutic gene to the spinal cord for an ultra rare inherited neuropathy is Giant Axonal Neuropathy (GAN). Congratulations to Hannah’s Hope Fund (HHF), a 501(c)3 public charity, which has driven this collaborative research in less than six years. Six million dollars has been raised to date to fund pre-clinical and clinical research on this rare disease.

A Rare Disease Patient That Does It All!

by | Dec 18, 2014 | | 2 Comments

A movie script could not play out like this. There are very few occasions when a rare disease patient becomes the topic of a story that is truly uplifting. Often the stories are tragic or disheartening. That was not the case, however, with CMT patient Kim Goodsell.

Hot Off the Press

by | Dec 16, 2014 | | 0 Comments

One of the ways that some CMT patients first become aware of their disease is when they are given a drug treatment for another disease. This is termed chemotherapy-induced neurotoxicity. Drugs such as paclitaxel and the vinca alkaloids that are widely used in cancer treatment cause severe peripheral neuropathy and in some patients this exacerbates CMT, revealing it perhaps for the first time.

Kara Q&A: How to “support” a friend or family member that’s affected with Charcot-MarieTooth.

by | Dec 15, 2014 | | 2 Comments

My name is Courtney Hollett, Fundraising Coordinator at the Hereditary Neuropathy Foundation. This time of year I count my blessing daily and wanted to share with you a Q&A session I had with a new supporter of HNF. Kara, like myself has many family members affected with CMT and I reached out to her to share her thoughts and advice about how to “support” a friend or family member that’s affected with Charcot-MarieTooth.

Collaboration is the Key to HNF Success

Collaboration is the Key to HNF Success

by | Dec 4, 2014 | | 0 Comments

We at HNF are so proud of the accomplishments of those scientists we fund and are asking you to please continue to support our efforts. Our Therapeutic Research In Accelerated Discovery (TRIAD) program is a proven collaborative model in the drug discovery process.

Sneak Peak of Fall Newsletter: CMT Research Study Survey

by | Sep 16, 2014 | , | 2 Comments

My name is Elizabeth Francisco and I am a graduate student from the Genetic Counseling program at the University of North Carolina Greensboro. I am inviting you to participate in a research study. The goal of my study is to learn more about the experiences of people with Charcot-Marie-Tooth (CMT) with genetic counseling and genetic testing. Adults with CMT and parents or legal guardians of someone of any age who has a diagnosis of CMT are eligible to participate

Join the conversation

Leave a Comment

0 Comments

Submit a Comment

Your email address will not be published. Required fields are marked *

Newsletter

Join for notifications on events, campaigns, & news