Happy Birthday

2019 October 03

Created by Ritje 4 years ago

Today, Ritjes, reading @ the office of Representative LaHood and staff

For the flag, they flew for JiePie:
A man, a husband, a father, a brother, an uncle and grandfather
JiePie was all those things.
He became a great advocate to get his drethful disease MSA out of the unknown. 
That disease had no known cause, treatment or cure when he had the disease from 2000-2009
CO-founder of the MSA Support group in Belgium. A small country became the center of great ideas and a world without borders for all those affected by MSA. 
MSA-AMS Belgium, a partner organization of the MSA Coalition (USA), works intensively in Europe to support and guide MSA patients, to organize MSA symposiums and to fund scientific research.  
The Belgian, Multiple System Atrophy Support Group has a 4-pillar Mission: 
- SUPPORT - EDUCATION - ADVOCACY - RESEARCH FUNDING

The MSA patients support group is run entirely by volunteers and has no paid employees. The non-profit organization has grown steadily since 2008 and now has a primary mission/goal of helping to encourage and fund research that will lead to a cure for multiple system atrophy.
The MSA-AMS has a dedicated MSA Research Fund, awarded with the yearly JiePie research Award. 

JiePie, was respected by all those, who have been lucky, to get him known in person. 
JiePie was a great advocate for his fellow ’co-patients' to ask them, they needed to signing-in for brain donation. 
Also the Neurologists and the researchers know the JiePie Awards for MSA research and are eager to get a nomination for this well respected Award. 

World Multiple System Atrophy Day, on October 3,  is celebrated around the globe by all who walk, run, cycle or roll and count up the miles to collectively circle the earth in unity of awareness for this rare disease
We all light candles at 8pm so the unbroken chain of light travels around the world hour by hour. Collectively we count miles walked or cycled and attempt to circle the globe. All to symbolize our unity in the fight against MSA

-      Thank you Representative LaHood and staff for sharing in this moments of love and of World MSA Day. 
-      We invite you and your team to participate on this day and add all your miles on the Counting page.

      

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