As a member of the International Alliance of ALS/MND Associations, Prize4Life is pleased to participate in Global Day for ALS. Since 1997, the International Alliance has celebrated 21 June as the global day of recognition for ALS– a disease that affects people in every country of the globe.
June 21st is the summer solstice—a turning point—and every year the ALS community undertakes a range of activities to express its hope that this day will be another turning point in the search for cause, treatment and cure of this disease.
Members of the International Alliance, and those who have been touched by ALS worldwide, do a number of things to call attention to the plight of ALS patients. Some organize meetings of patients and caregivers; they put on social events, create working groups, hold fundraisers, or simply come together to reflect on being part of the global fight against ALS.
The following is a reprint of the annual letter from Gudjon Sigurdsson, the Chairman of the International Alliance of ALS/MND Associations:
Global day 2010
The fight continues for a world free of ALS/MND. This year’s global day is no different from others. We will do our best to spread the word about the damn thing we all fight against. Soon we will celebrate this as the day we remember as the day we won the fight and got rid of ALS/MND.
Until then we all must do our best to enjoy every moment of each day. As well as we possibly can. “A glass full of darkness and sorrow is always by our hand. A bit further is a glass filled with light and opptimism. Reach for it.” These words of an Icelandic poet who died from ALS/MND, are worth keeping in mind.
My wife and I are celebrating our 25 years anniversary of marriage this month. I am very lucky she has put up with me all this time. We have agreed that this is only possible if both do their best to make it last and be enjoyable. Friendship and connections with others does not happen by itself. No, we need to work on it. Communicate and tell people we love, that we do.
In those times of crisis we need to defend our rights, find new ways of doing things and do not forget we are here for all the PALS around the world. Making it possible for them to enjoy life, support research and inprove the law and regulations in our home country.
BEST OF LUCK
Chairman, International Alliance of ALS/MND Associations
Global Day is a day of commemoration and strength-building. It, like ALS Awareness Month here in the United States, is an opportunity to assert the resilience of the human spirit over the ravages of ALS.
Prize4Life believes deeply in this resilience, and makes change our business. We know that it is a priority to assist those in need right now, and our colleagues in patient service programs are doing a spectacular job of that. Other organizations, such as the ALS Association and the MDA, fund researchers upfront, and their support has done incredible things for the progression of ALS science.
Prize4Life’s programs are intended to speed up this work by providing resources and incentives that may not otherwise be available to researchers and to the ALS community. Our prizes are intended to foster creativity and new approaches (see the range of talented teams who are currently competing here). This blog, for example, is designed to bring different stakeholders and opinions together to discuss various elements of the ALS, R&D, and philanthropy spaces. Our ALS Forum is a free news source for patients and researchers alike, a cutting-edge resource that gathers the most up-to-date ALS research information in one place.
We are proud of these contributions, and we are always on the lookout for other ways to bring innovative parties and stakeholders together.
What will you do to help win this battle? For a list of ideas, click here. Or email us!