Leadership. Sigurdsson, seated, led a group from the Reykjavik-based International Center for Research on Motor Neuron Diseases on a tour of ALS TDI in Cambridge prior to flying to Chicago
“Stay in touch with patients, we are the specialists in this condition,” said Gudjon Sigurdsson, chairman and PLS patient from Iceland, during the 20th annual meeting of the International Alliance of ALS/MND Organizations held in Chicago on December 2 & 3.
Completing a four-year term at the helm of the nearly 70-member alliance, Sigurdsson gave these and other parting words of advice to advocacy groups working to provide better care and treatments for people with ALS. Jeffrey Dietch, PhD, director of the ALS Hope Foundation was elected as the next chairman of the International Alliance.
The organization has grown over the last number of years, and welcomed new members this year from Peru, Russia and Latvia. Independent member and nurse Kathy Mitchell, and others, have been travelling around the globe to identify potential new members and determine their nation’s pALS’ needs.
“Don’t wait for the funding, do what you love,” said Mitchell, “the money will come.” She cautioned that those like her who seek out advocacy groups need to have flexible goals, measure outcomes and continuously be responsive to the unique political and cultural climates of each nation.
“Israel may be the only country in the world where once a person goes on a ventilator it is illegal for them to be removed from it,” said Efrat Carmi, CEO of IsrALS, the only ALS-focused organization in Israel. Earlier in the two-day meeting, Carmi had a warning for the US-based organizations to get ready.
Several years ago, IsrALS issued a small grant to researchers to investigate the potential for stem cells as a therapy for ALS. The grant, in part, led to the launch of clinical trials of BrainStorm Cellular Therapeutics’ NurOwn. While excited about the promise of stem cells as a treatment for ALS, Carmi reported key challenges.
“Patients and families are very aggressive. They want it. They want to know who they can bribe to get it,” said Carmi.
With a potential Phase II trial of BrainStorm coming to the greater-Boston area in the United States early next year, Carmi advises her American colleagues to develop an open line of communication with BrainStorm and ALS patients well in advance.
“There are 12 patients in the trial, and the company reports efficacy. But I know these families and they don’t report efficacy to us.”
From Russia with love
Reemergence. Gleb Levistky, MD, and colleagues at the Russia ALS Charity Foundation aim to create the first sustained research and care system for patients in Russia since ALS was first documented there in 1889.
The first case of ALS/MND is Russia was reported in 1889. However it wasn’t until 2006 that national guidelines for the diagnosis and care of ALS patients were established according to the Russian Charity ALS Foundation Gleb Levistky, MD PhD.
As many as 7,000 people are living with ALS in Russia. But there are only 3 NIPPV devices available for ALS patients in Russia today according to Levistky. His organization has helped provide them to 14 people with ALS over the last six years.
Levistky hopes to create awareness and encourage greater support for people with ALS in Russia. In 2011, he helped to organize the first ALS certification course for neurologists and worked with Mitchell and others to advocate for assistance from the Russian Ministry of Health.
The incidence rate may be higher for those living in Peru than in other places in the world according to ELA Peru’s Gabriela Zarate. Nearly 5 out of every 100,000 citizens have the disease. ELA Peru, launched in 2009, aims to improve the quality of life for the approximately 1,500 PALS in the small Latin American nation, no matter where they live.
This includes Jamie Ramirez, who in the early 1990s, a convicted terrorist sentenced to prison for at least 25 years. Almost 17 years in prison, he was diagnosed with ALS. He requested a shortened sentence to receive treatment, which he did twice, both times denied. A third attempt was pending when Rameriz passed in October 2012.
Ramirez’s struggle helped ELA Peru raise awareness of ALS in Peru according to Zarate.
Rod Harris, Executive Director of MND Victoria, a member of MND Australia, reported that the country is soon to develop a new entitlement system for the more than 400,000 disabled including nearly 1,500 PALS. The proposed program however would only provide coverage for people under 65 years old.
Next year, the International Alliance will meet in Milan, where it met 10 years ago. In 2014, the Alliance will meet for the first time in Brussels, Belgium, hosted by ALS Liga Belgium. Many in the Alliance expressed excitement for this meeting and the opportunity to see the soon to be constructed “Care Center Middelpunt” on the North Sea. This facility will house 20 PALS, providing them with care and access to state-of-the-art technology at no cost. The center is scheduled to open in June 2013.
About 100 delegates participated in the 20th meeting, representing several dozen different nations. More than 20 patient health professionals and patient advocates presented their experiences. Incoming chair Jeffrey Deitch of the ALS Hope Foundation presided over the meeting, and incoming Alliance coordinator Rachel Patterson took the official minutes. An audio recording of the two-day meeting will be available on the International Alliance’s website, http://www.alsmndalliance.org.
NOTE: The ALS Therapy Development Institute is an Associate Member of the International Alliance of ALS/MND Organizations.