19th Annual Meeting of the International Alliance of ALS/MND Associations (Day 1)

 

 

The first half of the first day, November 27, 2011, was devoted to a review and set of workshops on the strategic goals of the Alliance.  This process began last year in Orlando when a final report from a University team in the UK was presented.  Following that initial report, the Alliance formed a volunteer external review committee that included representatives from 6 different countries.  A member of the staff at TDI was part of the volunteer external review committee. 

 

The outcome from this session was the formation of six working groups to be organized over the next month and to provide recommendations to the full Alliance soon thereafter.  An Organizational Structure Group, led by Jeff Deitch (ALS Hope, USA) will review how the Alliance is operated and determine whether or not to replace the recently departed paid-coordinator with a similar person and/or to hire a full-time executive director and to determine the job description of such a person.  Another group, chaired by Jane Gilbert (ALSA, USA) will focus on Membership, and report back recommendations on the benefits and responsibilities of members of the Alliance which currently includes three different categories of membership.  Carol Birks (MND Australia) will lead the Program Group, which will be charged with reviewing the Alliance’s current programs, of which there are at least four, and reporting back suggestions of how to officially document the process for each and make recommendations for their future.  The Partnership Group will be headed by Teresa (FUNDELA, Spain) and is charged with creating a series of recommendations that can be implemented to support existing and develop new partnerships between organizations within the Alliance.  Partnership is at the heart of the mission of the Alliance.  A fifth group, led by Evy Reviers (ALS Liga, Belgium) will be tasked with providing insight into Fundraising strategy and opportunities that the Alliance should/could take to make it more sustainable and allow it to achieve its goals.  Finally, a separate Communication/PR Group will be organized by Steven Bell (MNDA, UK) and Bob Bestow (MNDA Scotland). 

 

There was much hope for the outcome from this effort expressed by many people in the room, including the second and third chairs of the 20-year old International Alliance, Mavis Gallienne (MND Victoria) and Wendy Abrams (Les Turner Foundation, USA).

 

 

Following a break, the Japan ALS Association (JALSA) gave a moving presentation on the power of unity following the massive quake in Japan earlier this year. Following the March 11 disaster, JALSA quickly organized a committee to respond to the needs of people living with ALS in the island nation devastated first by the quake and then by tsunami and partial nuclear fallout.  The committee quickly identified the PALS in need, and then worked directly with the government to provide relief and transport them to temporary safety and services.  They received nearly 1.5 million yen through donations from people all over the world to support these relief efforts, much of the funding went as cash payments to PALS affected by the disaster.  With the country's only domestic factory that produced processed food designed specifically for use in feeding tubes destroyed by the devastating series of events, PALS were in desperate need.  The committee expressed immense gratitude to the Taiwan ALS Association for their massive donations of hundreds of pounds of the specialty product immediately following the quake.  In closing, JALSA provided recommendations for all ALS groups to consider putting out in their own countries, outlining the need for families with PALS living at home to maintain an emergency kit of supplies to last at least three days in case of a disaster similar to that which rocked Japan earlier this year. JALSA Director, Yumiko Kawaguchi gave the presentation.

 

 

Antje Faatz from DGM in Germany gave a talk that included a description of her organization’s first ever online resource aimed directly at ALS patients and families, and reports on their recent efforts to organize and train volunteers that help to care for people living with the disease in her country.  Currently, ALS patients in Germany are primarily services under the umbrella organization DGM, but in three weeks time from this report, they will launch a new website that provides specific information to people living with ALS, children of PALS, caregivers of PALS and the general public.  This first of its kind resource in Germany is the first step toward creating an individual set of services in the central European country in order to provide disease specific services and information as well as streamline the processing of financial and other donations given in a restricted way to support PALS and ALS research.  On another front, Faatz reported on their efforts to coordinate caregivers, nurses and neurologists that see and serve people living with ALS.  This project, called "ALS Self help", is designed to set-up an information exchange between volunteers on the services available to them and the people living with ALS that they support.  She also expressed a renewed focus in her organization to recruit more young people into care giving and volunteer roles.

Dr. Tsai of Taipei Hospital again represented the Taiwan MND Association at the Alliance meeting.  His organization has focused in the last year on created a program to help make the "dreams" of at least 30 people living with ALS in his country come true.  He described the first three in moving detail to the international congress that included at least 10 Taiwan delegates.  The first story was about a Mr. Cheng, who was born at the foot of Taiwan's largest mountain, Mt. Jade.  Diagnosed last year with ALS, it was always his dream to go up the mountain, and after a comprehensive check with his medical team he was cleared to make the trek.  A large group of volunteers accompanied him on the high-altitude journey to him achieve his dream.  A second story, entitled "Belated Wedding Party", described how the Association had helped to organize a long over-due party and mend family ties.  Yun married Ling without the blessing of her family, leading to a long strife between them, and preventing the couple from celebrating their marriage.  Yun was diagnosed with ALS recently, and with the help of the Association, they were able to hold a belated wedding party, take official wedding photographs and bring together the two families for the first time.  The final dream achieved was helping ALS patient Su-lan travel back to his home village to stay.  From a remote and small village, the Association and an army of volunteers reconstructed Su-lans kitchen, living room and home so that he could live among his roots.  Without a nearby medical center or staff in the town, the Association arranged for people in the town to provide Su-lan with living assistance and trained locals on how to help him with various issues should they arise between his regular check-ups from more skilled staff.

 

 

Tatiana Silva of ABRELA in Brazil walked the Alliance membership through her organization’s activities over the last year that included two important conferences and a major awareness day with the help of Romario.  The 1st meeting of the Brazilian and Hispanic ALS/MND organizations was held on June 16th this year, and included delegates from Columbia, Peru, Brazil, Spain and Mexico.  They discussed their common goals, individual histories, and organizational objectives.  Later on in the year, ABRELA hosted the 10th annual Brazilian MND Symposium, which brought together 200 care and research experts from throughout the massive country.  One of the highlights of this meeting was the agreement to develop an electronic protocol for diagnosing ALS patients and evaluating their progression to better organize care and research efforts in Brazil.  Finally, Silva described the exciting International ALS Day and soccer game held this year between Fluminense and Bahia.  Each of these teams has a former player living with ALS today.  In addition, Romano de Souza Faria, one of the most prolific soccer scorers of all time, led an awareness day devoted to ALS.  Now a congressman, Romario, as he is known, scored 1000 goals during his long career, second only to Pele.  ABRELA hopes to repeat the soccer match and awareness activities as often as possible.

 

 

Alliance board member and education officer, Bob Bestow, from MND Scotland, was next up to the podium.  According to his organization's analysis, the risk of a person developing ALS in Scotland before they die is 1 in 450.  With an aging population, Bestow's research showed that as early as 2020, every young person in Scotland will likely have to enter a care profession to assist in the support of older people living with ALS and other debilitating disorders.  Scotland has a complex healthcare oversight system that involves both local government as well as regional health boards, which often do not overlap exactly, creating the need for increased coordination and involvement by the only organization in Scotland that supports MND patients.  Over the last year, Bestow and a team of medical advisors and experts, as well as his colleague and MND Scotland CEO, Craig Stockton, have created 60 different informational pamphlets on ALS related issues.  They cover everything from defining genetic forms of MND, to nutrition, to breathing, working, etc. with ALS. One of the most successful items created recently to support families with a person living with MND was a booklet geared toward young people and teenagers. That booklet is designed to help them learn about the disease, what it means and how to talk about it with others using terminology common among young people.  Many organizational representatives in the room expressed an interest in converting the pamphlets for use in their own countries and Bestow offered them without hesitation to work with any organization that wanted them.

 

 

The final speaker for the day was Santomi Homma, of Japan. Her organization had lobbied their government to provide coverage for a Cough Assist device to all people living with ALS in Japan.  They were successful in April 2010, and have the device approved and coverage extended. She outlined that by putting together an evidence-based report of the device and highlighting its specific abilities to improve oxygen levels in the blood, thorax movement and relaxation, was the key to their success.  Homma and colleagues demonstrated the device with the help of an ALS patient from Japan and provided an informational brochure to all attendees on the device, its use and potential benefits.

 

A recap of the second day of the Alliance meeting can be found here. You can follow updates in real time from this and other meetings via our Facebook and Twitter pages.