19th Annual Meeting of the International Alliance of ALS/MND Associations (Day 2)
By: Robert A. Goldstein
The 19th annual meeting of the International Alliance of ALS/MND organizations took place this week in Sydney, Australia. The Alliance chairman, Gudjon Sigurdsson, an ALS patient from Iceland, presided with the assistance of his daughter, Arrny Guðjónsdóttir. The meeting was hosted by the MND Association of Australia. Over the two-day annual congress, 79 people from 20 countries and representing 19 members participated in discussion, gave presentations and debated the state of ALS care and research worldwide. This serves as a recap of the two-day conference. All presentations and a video of the event will soon be available online at www.alsmndalliance.org
. TDI is an associate member.
Alliance Grant Helps to Drive Development of First Ever ALS Clinics in Turkey
The first presentation came from Rachel Masden of the UK, who described her and her colleagues’ partnership with the MND Association in Turkey. This partnership, funded in part through the Alliance and its membership, was designed to evaluate the current state of ALS care in Turkey, make recommendations and then implement a training program. Over the first couple of years, they held nursing coordination activities, met with the Turkish Ambassador in London, and eventually returned to Turkey to meet with policy makers in Ankara. Last year, the Alliance-funded team organized a meeting for senior nurses in the University Hospital in Istanbul, conducted training and began to plan a trip for 15 of them to the UK. During that trip the nurses toured ALS clinics and hospice centers, a concept unfamiliar to them in Turkey, according to Marsden. In closing, Marsden provide the Alliance with incredible news: Turkey had agreed to set up seven ALS/MND centers over the coming years. Such specialized centers have never existed in the country. Unfortunately, the team also reported that their efforts to bring 96 care specialists from Turkey to the UK for intensive training was delayed this year due to visa issues, but they expect the group to be able to receive the training by January 2012. In response to questions from the audience regarding their efforts, Marsden commented that it is crucial to approach these types of partnerships with the idea of making them sustainable at the forefront of the plan.
PALS in Moscow Russia Get Much Needed Support
The following presentation followed along this same theme and came from Kathy Mitchell, an Individual member of the Alliance. Mitchell has long been developing partnerships with assistance from the Alliance. She discussed her recent success in helping to advance care for ALS patients in Moscow, Russia. During her visit there she met with the Minister of Health to discuss setting up a patient registry for the country. There are an estimated 500 PALS in Moscow alone, according to Mitchell. She attended a three-day conference while there, the first ever of its kind devoted to the care needs of ALS patients as well as research activities in the country. Through her collaborators at a local convent, she had the Oxford Press Guide to ALS care, originally written by Marsden’s team, translated into Russian. Further, with the nuns, she held a seminar with patients, families and caregivers on living with the neurodegenerative disorder. Mitchell reported with great excitement that after her trip, the local convent has taken the lead in Moscow and put together a support group for PALS, CALS and volunteers to provide food and transport for them.
Assistive Technology Options Limited in Israel
Sarah Feldman was a last minute addition to the schedule and spoke next, also on the topic of partnerships inspired through the Alliance’s work. Feldman recently attended meetings in Israel at the request of fellow Alliance member IsrALS and its leader Efrat Carmi. While there she participated in a multi-event conference. The conference began with a broad overview of how to communicate a diagnosis to a person that they have ALS, how to train families to speak to their children and communities about the disease as well as assistive communication technologies available for PALS. The afternoon session went deeper into each topic. Feldman then learned first-hand the realities of the challenges that PALS in Israel face with communication devices when she visited the clinic in Haifa. Only one communication software is available in Hebrew in the country, according to Feldman. She commented that she was surprised by this fact and the lack of options available to PALS in this developed nation. In all, Israel has two ALS clinics, but no multi-disciplinary team, which is the current focus of IsrALS. In closing, Feldman stirred an important discussion among Alliance members when she shared that there is nearly a 100% ventilation rate in Israel for ALS patients and that when a person reaches that stage the state healthcare assigns them a home health aide.
Finland Joins the International Alliance
This was the first year that the Finnish Neuromuscular Disorders Association attended the Alliance meeting, of which it is a new member. Eveliina Pollari was the attending representative. She informed the international body that it is estimated there are 3000 people living with ALS in Finland today. Founded in 1982, this Nordic association has 18 full-time staff, and five local offices serving patients and their families. They provide an important and comprehensive set of services, similar to those provided in the US. Chairman of the Alliance, Gudjon Sigurdsson, welcomed this fellow Nordic country to the Alliance with great joy.
Incurable Optimism Gets New Face in 2011
The second to final speaker of the day was Steven Bell, Director of Regional Care-North for the MND Association of England, Wales, and Northern Ireland. Bell used his time at the microphone to present an update on his organization’s “Incurable Optimist” program, which this year focused an MND patient, Alistair. The program uses social media, YouTube and blogs to help spread awareness of MND in that country, and according to Bell, they have received free promotional advising space in the major dailies in the UK as well as on popular transport systems. In addition, art displays featuring Alistair have appeared in the parliament building and at museums, including one which had a massive sculpture of Alistair’s head on display for a period of time.
Referral Rates in South Africa Key to Supporting PALS
Closing out the 19th annual meeting of the International Alliance of ALS/MND Organizations was a re-introduction of the MND Association of South Africa. While they have been members for a number of years in the past, this year marked a return of the group to the annual meeting with the talk being given by Dr. Franclo Henning, a clinical neurologist who helps to run the Association. They have 4 full-time staff and 3 field workers to serve the estimated 3000 MND patients in the country of more than 50 million people. While Henning estimates that the actual number is less, he and his Association reported that they are focusing on reaching more that the 200 PALS that they currently serve. The organization doesn’t receive any government funding directly, and operates annually on about 50,000 GBP. Henning reported that his board has directed him and others involved to increase awareness of the Association among the 100 neurologists in South Africa, in hopes of increasing referral rates. The Association believes that neurologists in South Africa are simply not aware of the support that they can provide people living with MND there.