CATEGORIES: Awareness

Lend A Helping Hand: Join Our #ShowYourHandsCMT Social Media Campaign!

by | Sep 3, 2015 | 0 comments

ShowYourHands (1)The Hereditary Neuropathy Foundation is continuing their popular Text2Give campaign this year with the theme “Show Your Hands.”

Everyday tasks such as holding a coffee cup, opening a gas cap, and buttoning a shirt can be challenging, and in some cases, impossible for those affected with Charcot-Marie-Tooth Disease (CMT).  Because there are different types of CMT, hand symptoms can also vary from patient to patient. People with CMT may experience the following hands signs and symptoms:

  • Contractures and bone deformities: This can “lock” the fingers in a flexed position, limiting normal range of motion.
  • Muscle weakness: Progressive loss of hand control.
  • Sensory loss: Sense of touch and temperature is diminished. CMT patients may experience cold hands, tingling, burning, and/or dry skin.

You can show your support for those living with CMT by participating in our Text2Give social media campaign.

Here’s how!

  1. Text CMT to 501501 to donate $10.
  2. Snap a picture of your hands with your mobile device.
  3. Share your picture on any social media platform #ShowYourHandsCMT.
  4. Share/tag your friends Text CMT to 501501 to donate.

You can also help spread the word by updating your Facebook cover photo or Twitter header photo with our #ShowYourHandsCMT banner found HERE.

Together, let’s join hands and find a treatment and a cure for CMT hands!

 

 

 

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Allison Moore is going to be published!

HNF’s CSO (Chief Scientific Officer), Sean Ekins wrote a blog about his work with Allison Moore and her two “fighter Mom” friends Lori Sames and Jill Wood. He named his blog: “Rare disease heroes – Extraordinary collaborators we should be listening too.” Sean helped my friends and I write a paper called: “Multifaceted roles of ultra rare and rare disease patients/parents in drug discovery.” YES, Allison Moore is going to be published! It will be in Drug Discovery Today, soon. The link to the reprint is below.

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