Just four short years into its founding, Ipoh-based Perak Parkinson’s Association (PPA) has networked renowned global experts and built a coalition with a US-based foundation to promote awareness, timely diagnosis and access to treatment of people with Parkinson’s, a debilitating progressive neurological disorder.
Benefiting from the networking opportunities with health professionals and fellow Parkinson’s patients at the World Parkinson Congress (WPC) in 2013 in Canada, the PPA is looking forward to building and extending its global reach at the next World Congress to be held this September in Portland, Oregon, USA, thanks to a RM100,000 donation from the Chemical Company of Malaysia Berhad (CCM).
PPA which has to-date established links with two respected Parkinson’s champions, academic neurologist, Dr John Stamford, with over 20 years of research into the disease and John Baumann, an inspirational speaker and academic at the University of Louisville, USA and a partnership with Colorado-based Davis Phinney Foundation, named after a former American cyclist, Tour de France double champion and Olympic bronze medalist who was diagnosed with young-onset Parkinson’s disease at age 41 years old.
Together with the Davis Phinney Foundation, PPA organised a hugely successful Victory Summit at the Casuarina@Meru Hotel, Ipoh on October 11, 2015, attracting distinguished speakers and close to 900 participants from Malaysia and the region (see pic).
PPA is led by president, Mr Samuel Ng who is well acquainted with the struggles faced by People with Parkinson’s (PwP), being a patient himself.
“Parkinson’s takes away our mobility day by day and moreover, a cure has yet to be found. It’s also difficult to diagnose and treat as no two cases are exactly alike. While some develop clear symptoms such as gait problems and fluttering hands right away, many others never do. They spend years going from one physician to the other to get answers for their condition and some even withdraw from going out in public for fear of being stigmatized or feeling embarrassed.
The members and I have personally gone through numerous struggles in our journey with Parkinson’s and want to help others like us by sharing our knowledge and experience. I believe this is also a crucial step towards helping medical experts develop more effective treatments, and ultimately, contribute to the development of a cure,” he said.
Samuel expressed that a key mission for the group is also creating awareness of the disease among professionals and the public. With the help from international experts, PPA has been able to promote greater education on the latest medical breakthroughs, treatments and research of Parkinson’s.
Showing no signs of slowing down, the association is gearing up for the upcoming WPC 2016 which it hopes to send 30 to 40 representatives including local medical professionals.
“Our next move, thanks to the support from CCM, is to attend the upcoming WPC 2016. This time, we want to bring with us local medical practitioners who have shown a keen interest in furthering their engagement with PPA and, increasing their knowledge and specialty to treat the disease,” said Samuel who shared that Ipoh had yet to have a Parkinson’s specialist with sub-specialties practice in treating the disease while in Malaysia, there are only six.
“I believe the congress will be an important step forward to help physicians, rehabilitation experts and our members interact with fellow professionals and get first-hand information on topics such as diagnosis, treatment, living with and researching Parkinson’s. Equipped with knowledge, I’m confident participants will be better able to assist the Parkinson’s community in Perak as well as Malaysia,” he added.
The triennial forum is expected to bring together more than 3500 people from 65 countries to learn about cutting edge science, clinical research and comprehensive care for Parkinson’s from some of the most renowned health professionals, researchers and advocates globally.
CCM’s Group Managing Director, En Leonard Ariff Bin Abdul Shatar said the Company was proud to be supporting a leading Parkinson’s association in the country and believes strongly in its mission.
“PPA is leading the fight against Parkinson’s by creating links with global key experts and opening up opportunities for our medical fraternity to gain greater insight and understanding on the disease. While a cure for Parkinson’s has yet to be found, efforts by PPA to increase awareness, accessibility of treatment and timely diagnosis are commendable and important to improve the quality of life of Parkinson’s patients in Malaysia. We at CCM want to play an active role to support PPA and in doing so, assist over 20,000 sufferers in Malaysia,” he added.
Established in December 2012, PPA is made up of 220 members comprising of patients, caregivers and volunteers. In 2013, the non-profit support group opened up a centre at Taman Mirindi, Ipoh to help patients and caregivers cope with the disease through a series of activities namely yoga, dancing, circuit exercises, Tai Chi and even karaoke. The centre, which is open on weekdays, also provides professional counseling to individuals in need. Apart from this, the association has organised a Parkinson’s Awareness & Fundraising Open Day, a charity cycling event and several talks to create awareness of the disease.
CCM, Malaysia’s largest generic pharmaceutical manufacturer, is listed on the main market of Bursa Malaysia and is a key player in the chemicals and pharmaceuticals industries. CCM turned 50 in 2013, celebrating five decades of commitment to enhancing the quality of life for all Malaysians. As CCM forges ahead, the Group will continue to strive for innovation and empower its employees in order to ensure product quality and customer satisfaction for years to come.