CATEGORIES: CMT Update | Team CMT Members

MightyMan Half Iron Distance Supports HNF

by Courtney | Jul 31, 2017 | 0 comments

Check it off your bucket list!

On Sunday, October 1, 2017 the Hereditary Neuropathy Foundation will participate in the MightyMan Half Iron Distance in Fort Pond, Montauk, NY as a charity partner.

Did you know that Montauk, NY is one of the birthplaces of triathlons? Montauk is a quaint fishing and surfing town on the easternmost tip of Long Island. Athletes will love this course for its natural beauty and small-town feel. This is a great family weekend to spend on the Island’s east end—at a time when the weather’s still nice, but the summer crowds are not as heavy.

HNF is looking for individual participants and relay teams for this Half IronMan. If you would like to just swim, then HNF will find people for the bike and run segments.

Interested in joining us? E-MAIL: [email protected]

FOR MORE RACE INFORMATION, CLICK HERE

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Spread Awareness – Visit California Pizza Kitchen During September: CMT Awareness Month

by Courtney | Aug 19, 2014 | CMT Update | 0 Comments

Want to help fund research and spread awareness? Well here is your chance and mingle with friends and family while you dine!

Building Awareness on CMT and Supporting the Patient Community – HNF Announces Support from Pharnext

by Courtney | Aug 19, 2014 | CMT Type - CMT1A, CMT Update, Research | 1 Comment

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.

Lyme Disease and Charcot-Marie-tooth: What You Need to Know

by Courtney | Aug 19, 2014 | CMT Update | 8 Comments

Sufferers of Lyme Disease and Charcot-Marie- Tooth often share many commonalities about their disease

WEDDING FOR A CAUSE!

by Courtney | Aug 19, 2014 | CMT Update, Ways to Give | 0 Comments

Cheryl and Robert made the altruistic decision to ask their wedding guests to make a donation to HNF in lieu of traditional gifts.

Join Team CMT – Be a part of finding a cure!

by Courtney | Aug 19, 2014 | CMT Update, Team CMT Members | 2 Comments

You can join us, and truly make a difference. Register to be a Team CMT member and you’ll be part of an international effort to change the future for those living with CMT.

Meet Elizabeth Stenz, Team CMT Member

by Courtney | Aug 19, 2014 | CMT Update, Team CMT Members | 0 Comments

Her sister was diagnosed with CMT when she was 14, and since then her and many family members have become very familiar with the disease and have worked to raise awareness.

In Memoriam

by Courtney | Aug 19, 2014 | CMT Update | 0 Comments

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).

Help us answer questions that your doctors and the CMT Research Community aren’t too sure about.

by Allison Moore | Aug 19, 2014 | CMT Update | 1 Comment

As Chief Science Officer of HNF, it is his responsibility to oversee the success of our TRIAD research program in which we fund translational research (pre-clinical and clinical), projects. HNF’s goal is to expedite the research process from bench to bedside.

Introducing A New Scientific Advisory Board Member

by Courtney | Aug 19, 2014 | CMT Update, HNF Team | 0 Comments

Nadia Litterman, PhD is Collaborations Director at Collaborative Drug Discovery (CDD), where she aims to identify and develop collaborations for drug discovery using CDD’s innovative informatics technologies.

Targeting PMP22 in CMT1A Patients with Gene Duplication

by Courtney | Aug 19, 2014 | CMT Type - CMT1A, CMT Update | 1 Comment

In previous collaborative work with a group of investigators including Dr Rolf Renne from the University of Florida, Dr. Alex Murashov from East Carolina University and Dr. Lynn Hudson from the NIH-NINDS, we validated a microRNA known as miR29a as a reagent that corrected the expression level of PMP22 in rodent Schwann cells.

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MightyMan Half Iron Distance Supports HNF

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