Welcome to the International Pompe Association (IPA)
Hero Award for YeeSeng Lee, father of two Pompe girls and President of Malaysian LSD Association
Ir. YeeSeng Lee lives in Malaysia and is father of two lovely Pompe girls named Yen Ling and Wei Ling and one son who is unaffected. He works with the Malaysia Electricity Board 'Tenaga Nasional Berhad', but at the same time he is also the President of Malaysia Lysosomal Disease Association. It is an association set up for the benefit of all Lysosomal Storage Disease patients.
On 17th April 2014, he was given the 'My Hero' award by the Kuala Lumpur and Selangor Chinese Chamber of Commerce and Industry (KLSCCCI). He was chosen as he fights for the whole nation. Ir. YeeSeng Lee says: "It was a great honor for me to receive the "My Hero" award. Getting this award means so much to me, it is recognition of my hard work that came at the time I most needed it. I felt frustrated at times. After years of trying to get our Ministry of Health to review their existing Enzyme Replacement Therapy funding allocation, nothing had changed. Our government still refused to increase the old budget. Currently the doctors are treating 15 LSD patients with this limited budget.
To raise awareness on Pompe Disease and to get attention from politicians and the Minister of Health in Australia, the Australian Pompe Association (APA) organised a social media event. The APA is a small patient organisation having 30 members. Via Thunderclap 179 messages were send to the Minister of Health on April 15, International Pompe Day. Also a number of members of parliament retweeted the tweets the APA had sent to them on International Pompe Day. In total 480 social media mentions of Pompe Disease were registered.
From all over the world people involved in Pompe Disease supported this initiative of the APA and showed that Together We Are Strong!
Raymond Saich, president APA, raising his voice on rare diseases at the Rare Voices Parliamentary BBQ.
Poland and Italy celebrate International Pompe Day
Associazione Italiana Glicogenosi (AIG) has given quite some attention to the first International Pompe Day that will be celebrated on April 15. April 15 has been elected to be the day of celebration by the international Pompe Community to honor Dr. J.C. Pompe. This day was the day of his death in 1945, killed by the Nazi Germans.
AIG created an animated video to promote International Pompe Day. The video tells about the problems of Pompe Disease, but that together we are strong. For more information you can visit the website of AIG, but also the Facebook page that was created for International Pompe Day
The Pompe Association Poland invites you for the celebration of International Pompe Day at April 15. The meeting will take place in the Library and Information Center at the Medical University of Warsaw.
Location: Library and Information Centre at the Medical University of Warsaw.
Time: 14.00 hrs
You can find more information of the event at: http://www.facebook.com/OgrodPompego