By Gudjon Sigurdsson, Chairman, MND Association of Iceland
This year, MND Association of Iceland will celebrate the legalization of Independent living law in Iceland. The right for disabled persons and helpers system is like many countries have. This was only possible with the help of our Danish friends, whom we met trough the International alliance. It has been constant fight since 2005 and in April 2018 we had victory.
The photo shows Evald Krog from the Danish association and me signing the beginning of formal work with the government in March 2007.
Never give up, world without ALS/MND is around the corner.
Greetings and love from Iceland.
By Hallie Kobylski, Marketing & Communications Associate, Les Turner ALS Foundation
In the United States, May is ALS Awareness Month. Along with others in the ALS community, we use this opportunity to raise awareness, fundraise for support services and research and educate the general public about the realities of ALS. This ALS Awareness Month, our Les Turner ALS family came together to spread the message of hope and help.
Throughout May, hundreds of volunteers took to the streets, standing at intersections, shopping malls and train stations in bright, yellow vests to collect donations from passerby and raise awareness through a fundraising program we call “Tag Days.” Other volunteers joined us in an educational program as ALS Awareness Advocates, leaving behind free kits full of awareness cards and stickers at local businesses, recreation centers and more. Across Chicagoland, twelve communities and over 400 committed volunteers joined us in our vision to see a world free of ALS.
To further extend our awareness efforts, we developed a social media campaign called “#HopeandHelp.” We shared stories of our volunteers and advocates, highlighted the resources we provide to people living with ALS and their families and described ways to get involved with the Les Turner ALS Foundation.
We are so grateful for our energetic and passionate ALS family. Because of their dedication to seeing a world free of ALS, over $30,000 was raised and over 243,000 people were reached!
by Dirk de Valck, Management Assistant & Administrative Officer, ALS Liga Belgium
On June 27, ALS Liga Belgium is organising a full day of interactive training on ALS care.
Besides PALS and their families, the audience will consist of medical and paramedical caregivers.
General practitioners and neurologists, as well as nurses and speech, physical and occupational therapists that provide care for PALS at home or in care centers will gather to improve their knowledge and skills in ALS care.
Speakers affiliated with the 7 Belgian Neuromuscular Reference Centers will provide sessions on all aspects of multidisciplinary care for PALS. Also, practical sessions will be held to train participants in hands-on ALS care.
During the same week, ALS Liga Belgium will hold an awareness-raising campaign in Belgium.
Both a television and a radio spot shall be broadcasted by the public station VRT.
We gratefully thank our collaborating media partner Publicis for their pro bono creative and production efforts!
On June 15, students from the “Interpreting 1” course at the Universidad de Buenos Aires participated in the filming of an awareness spot for Alliance member Asociación ELA Argentina (The ALS Association of Argentina).
The students read the Fundamental Rights for People Living with ALS/MND in English, and then translated it into Spanish in class.
The Secretary of the Asociación ELA Argentina, Pablo Aquino, who also graduated as a Sworn Translator from the same university, gave a short presentation on ALS and the history of ELA Argentina, which was also interpreted by the students using the specific microphones and receivers for this kind of conference.
This video spot was shared through ELA Argentina’s YouTube, Facebook and Twitter channels.
We are proud of the work our members are doing to promote ALS/MND awareness and the rights of people with ALS/MND worldwide!