For immediate Press release: World MSA Day.
MSA (Multiple System Atrophy) is one of those diseases, categorised under “rare diseases,” also called the ‘orphaned’ group due to the difficulty to break through the shield.
The people involved in bringing about awareness and who have become involved in promoting MSA Day, range from patients, carers, family, friends and neighbours who are affected by or who know someone with MSA.
Through advertising and a day or week dedicated to them, “well known” diseases have their dedicated attention. So far MSA has received almost no attention.
Last year letters were posted to some organizations asking if there was a day dedicated to bringing about awareness of MSA. Sadly they knew of no special day dedicated to MSA.
It was proposed and agreed earlier this year that, going forward, October 3 would be used as MSA awareness day.
During March this year groups from all over joined together and held the Multiple System Atrophy Awareness day which was profoundly promoted by Pam Bower from the online support group at YahooGroups/shydrager.
MSA patients rely on Internet contact, as most are no longer able to travel, write, or speak. It has become a cross-border exchange of information, through long distant calls and /or emails. All MSA patients or carers want the world to know about MSA.
Awareness Month has been met with great enthusiasm and has enjoyed great success. In the meantime preparation is in progress for MSA Day – a day that will be held, all over the world.
Being the first year, you can say we are still in the embryonic state, but as we know: ‘Rome was not built in a day.
We rely on the local support groups and organizations to highlight MSA in their own group, area, city, and country.
Each local group can use this day to promote local Awareness and obtain funding and support.
It is through the local groups that World MSA Day will become the most important day of the year for all MSA patients.
In the United States you can join the annual MSA conference in San Diego Oct 1st & 2nd by contacting the www.shy-drager.org. In the Netherlands a big conference is held on October 2nd and in Belgium a press release and info session is held in the University of Antwerpen on September 30.
For more info please, look into the links of the World MSA Day web or ask your local support group. Maybe they have planned something already, possibly something great, but that they have not yet informed us.
Many responses were received from the correspondence sent out in August.
Hundreds of email addresses can be added to the list, but to avoid misuse, the addresses are with-held to protect those who are eager to get in contact with other MSA patients.
To enable us to deal with the big demand, we promise to address this issue for the World MSA Day in 2011.
All organizations that have a web-site can be linked for free to the official webpage of World MSA Day.
The correspondence is centralized in Belgium and freely hosted by the MSA support group.
Rita Schouppe, who’s husband died in December 2009 after a long battle with MSA, will coordinate messages to all related Groups
Some others involved are:
Alessandro DiGregorio from Italy, Carol, Janet from Ireland, Max, …
Yvette from Israel. Some countries to date have no web and at the moment communicate by post.
Everyone agreed to be contacted through the world-msa-day@hotmail.com web-site.
Rita was appointed as spokesperson to represent them all.
This is a great start for all MSA patients and all the platforms related to this disease.
Even though we speak different languages, are different colours and are of different cultures, we all have the same disease.
With all our differences we are united in battling MSA and we truly hope in miracles. One day they will find how to cure MSA.
Please spread the word….
Rita Schouppe, spokesperson
World MSA Day Volunteers Team
Email: world-msa-day@hotmail.com
web: http://www.world-msa-day.org/World-MSA-Day/Welcome.html.html