The International Alliance of ALS/MND Organizations announced today that Jamie Heywood and Benjamin Heywood have received its Humanitarian Award. The announcement was made at the official opening plenary session of the International Symposium on ALS/MND Research being held in Dublin, Ireland.  

The Humanitarian Award was inaugurated in 2000 by the International Alliance of ALS/MND Organizations to recognize a non-scientific contribution to the fight against ALS/MND. The Humanitarian Award is intended to recognize and encourage individuals and/or groups whose work makes, or has made, a contribution of international significance for people affected by ALS/MND. 

In making the presentations to the Heywood brothers, Carol Birks, Chairwomen of the International Alliance read the following citation: 

“Often out of tragedy comes triumph, and so it is with the joint nominees for this year’s Humanitarian Award.  When their brother was diagnosed with ALS at the age of 29, Jamie Heywood and Benjamin Heywood were devastated at his prognosis and at the lack of effective treatments for the disease. 

They saw first-hand how isolating ALS/MND can be.  They took up these challenges as a family and, with family and friends, founded two organizations: one tasked with finding effective treatments for the condition, and the other to tackle social isolation and to collect anecdotal data on what other drugs, interventions or supplements might make a difference to those with ALS/MND. 

Today, these organizations are known as ALS Therapy Development Institute and PatientsLikeMe. PatientsLikeMe is now open to anyone and deals with patients affected by 2,500 different health conditions.  Both organizations have been instrumental in facilitating publications by staff and collaborators in prestigious journals such as the BMJ, Neurology and Nature and have been cited literally thousands of times in other peer-reviewed journals.”

The ALS Therapy Development Institute and its staff join the International Alliance and the 1200 attendees from around the world at the International Symposium in recognizing Ben and Jamie for their tremendous contribution to the fight against ALS/MND.