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!

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HNFpharnext recently entered into a partnership with the French biopharmaceutical company, Pharnext, to help raise awareness of Charcot-Marie-Tooth (CMT) disease and support the CMT patient community through several initiatives. Building awareness is key! Pharnext’s support will assist HNF in distributing HNF’s CMT Update quarterly newsletter, enhancing the Global Registry for Inherited Neuropathies (GRIN), setting up activities for CMT September Awareness Month in the US and strengthening the CMT Inspire Community.

In Memoriam

The HNF family has lost two great people this summer: Franklin G. Downing Sr. (father of board member Matthew Downing) and George G. Gatta (father of board member Kathleen Zappola).

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