'ALS Postcards' Highlight Global Efforts to Defeat ALS

by Amy Madsen on Thu, 2012-06-21 10:03

Launched on World ALS Day, ALS TDI's ‘postcards’ share stories of people around the world who are working to stop ALS

Article Highlights:
  • On World ALS Day, the nonprofit biotech ALS Therapy Development Institute launched its ALS Postcards initiative.
  • ALS Postcards share the efforts of people working to defeat ALS in different parts of the world; the first five people to be featured hail from far-flung parts of the globe.
  • New content will be added to the project through the end of 2012; anyone may recommend a person to be featured.

On World ALS Day, June 21, 2012, the ALS Therapy Development Institute launched "ALS Postcards" as part of an international effort to raise awareness of amyotrophic lateral sclerosis (ALS) — known as motor neurone disease, or MND, in most parts of the world.

The interactive ALS Postcards project shares the stories of health professionals, scientists and patient advocates around the world who are working to more effectively treat, care for and support people with ALS.

Based in Cambridge, Mass., the ALS Therapy Development Institute (ALS TDI) is a nonprofit biotechnology organization dedicated to developing effective treatments for ALS. MDA has partnered with ALS TDI to launch the largest drug discovery project in ALS to date.

ALS around the world

The first five profiles on ALS Postcards feature people battling ALS in five different countries, including some fairly remote locations.

  • In Istanbul (Turkey), Oxford University nurse specialist Rachael Marsden has launched an ALS nurse training program with the goal of finding better ways to care for people with ALS.
  • Neuroscientist Akshay Anand, at the Post Graduate Institute of Medical Education and Research in Chandigarh (India), is working to find out why some people with ALS live longer than others.
  • San Francisco University of Quito (Ecuador) neuroscientist Miriam Bucheli focused her research on finding biomarkers that can be used to diagnose or monitor ALS. She now teaches the people of Ecuador about the disease.
  • Neurologist Athanase Millogo in Burkina Faso is working to help people with ALS in Africa.
  • Guðjón Sigurdsson from Reykjavik, Iceland, battles ALS every day, but serves as chairman of both the ALS/MND International Alliance and the MND Association of Iceland as part of his efforts to rid the world of this disease.

ALS TDI plans to add new content to the postcards through the end of 2012. To suggest someone to be featured in ALS Postcards, email info@als.net.

National ALS Awareness Month in the United States

In the U.S., National ALS Awareness Month is observed each May in an effort to increase the American public's knowledge about ALS and heighten awareness of the urgent need for treatments.

A number of organizations sponsor national and local ALS events during May. Among other activities, MDA hosts the popular online series ALS: Anyone's Life Story, in which a different person with ALS is featured on MDA's website each day in May.

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Amy Madsen
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