CATEGORIES: CMT Update

The Un-selfie4CMT Campaign!

by | Aug 19, 2014 | 2 comments

SelfieHNF introduces our latest initiative to reach millions of people worldwide and raise money for CMT research using Text2give.

The Un-selfie4CMT campaign is not about disability. It is about celebrating and sharing our passions for the activities we are blessed enough to enjoy. We want to encourage others to take a moment of reflection and gratitude for the activities their bodies allow them to do, whether it is playing with their young children, preparing a delicious meal, painting, swimming, running, gardening, dancing, weightlifting. These activities are gifts and should be recognized as so.

Charcot-Marie-Tooth (CMT) is only one of the many diseases that threaten and effect the passions we sometimes take for granted, and it is a disease that has been in the shadows for far too long. Even though the 2.6 million people suffering with CMT exceeds the 2.3 million people affected with Multiple Sclerosis (MS), there is much less awareness about our disease, and substantially less funding for research towards treatments and a cure.

We have the power to change this…let’s put social media to work and celebrate our individual passions with action.

Its quite simple:

1. Download and print the unselfie flyer at www.cure.org/unselfies4cmt-campaign/

2. Fill in what you are passionate about, take your unselfie

3. Upload your unselfie at http://us2e.com/hnf/

4. Please don’t wait, download your photo today 
at http://us2e.com/hnf/ as HNF prepares for the launch of Un-selfie4CMT campaign on September 1st.

The Hereditary Neuropathy Foundation thanks Estela Lugo, the brains behind the Un-selfie4CMT Campaign. Estela was first introduced to HNF in 2009 when her physical trainer showed her a copy of a recent HNF Newsletter. Estela’s trainer was also the trainer for Allison Moore, the Founder and CEO of HNF, who shares with Estela the common struggle of living with CMT. Estela has been actively spreading awareness via social media, fundraising, and participating in local events. Let’s 
all be CHAMPIONS,
 so we can be 
WINNERS this 
September!

Text CMT to 501501 to donate $10 and
then share your un-selfie on social
media! #UnSelfie4CMT

Learn more on this topic

Related Blog Posts

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

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).

Targeting PMP22 in CMT1A Patients with Gene Duplication

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.

Join the conversation

Leave a Comment

2 Comments

  1. Mel H

    Which organization is the money going to?

    Reply
    • courtney

      The money is going to research for Charcot-Marie-Tooth.

      Reply

Submit a Comment

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

Newsletter

Join for notifications on events, campaigns, & news