Pertubuhan Penyakit Lisosomal Malaysia
30-11, Geo Sense, Jalan Lagoon Selatan, Bandar Sunway,
47500 Subang Jaya, Selangor.
12 JUNE 2022
RIDE WITH HOPE MIKU CHALLENGE RAISES RM100,000 FOR RARE DISEASES PATIENTS
Rembau, 12 June 2022 – The inaugural Ride With Hope - Miku Challenge 2022 concluded successfully in an event that was participated by close to 600 participants and rare diseases (RD) patients while raising RM100,000 for Tabung Amanah Penyakit Jarang Jumpa Malaysia in Rembau, Negeri Sembilan today.
Organised in collaboration with Malaysia Lysosomal Diseases Association (MLDA), Malaysian Rare Disorders Society (MRDS), Persatuan Sindrom Prader-Willi Malaysia (PWSM) and Persatuan Berbasikal Negeri Sembilan, the objective was to raise the awareness on RD and educate the public on the platforms and assistance available for them. The Challenge was organised as a continuation of a series of engagements and commitments by various patient groups towards better advocacy, collaboration and intervention for RD patients and families in the country.
The Miku Challenge 2022 echoes the call to action and supports the Government’s plan to launch the Tabung Amanah trust fund that would enable RD patients in need across the Country access to life saving drugs and live preserving intervention and medical care. The plan, which was also mentioned by the Minister of Health, YB Khairy Jamaluddin in his remarks at the first Rare Disease Community Virtual Family Gathering & Conference in February 2022 is testament to the Government’s commitment towards more equitable access to healthcare and wellbeing for all Malaysians.
The Minister of Health further thanked the Miku Challenge organisers for lending support and stated that such collaboration between the Ministry, patient groups and all stakeholders in the ecosystem is the way to go and much needed if we are to tackle complex challenges of rising healthcare provision and treatment cost further exacerbated by the Pandemic. Funds that are raised during Miku Challenge will go towards kick-starting the Rare Diseases Trust Fund or Tabung Amanah Penyakit Jarang Jumpa for the Country.
“The Trust Fund falls under the Rare Disease Programme Strategic Plan for 2022-2023, which is in partnership with patient advocacy groups. While the Government will make allocations into the Trust Fund, we also look into leveraging funds from the private sector and charitable donations to meet the cost of treatment. So, congratulations to all the donors too as this initial RM100,000 is an important boost.”
Senator Datuk Ras Adiba Radzi was all praises as she congratulated the participants, especially those who are patients and parents. She added that she has been following the development of RD advocacy in Malaysia and shared that there is a need for an official and up to date registry for RD for the country.
“Some groundwork has been done on building this database, which falls under the 12th Malaysia Plan. This is important as the Database on RD will be the repository of the various types of diseases in Malaysia inclusive of the medical protocols that go with it. The database will be an invaluable resource of information to not just the medical sector, but especially for the Government Ministries to develop better policies, stakeholders in care and service provision, as well as the RD community from patients, advocacy groups, caregivers and individuals alike to receive current information that will help them to manage the disease better. At present, I am made to understand that there is still much work to be done to capture the approximately 7,000 RD.”
Ride With Hope - Miku Challenge 2022 was opened to four categories – 74km, 16km, 1km fun run/walk and 30km virtual ride. Participants as young as 4-years old took part in the challenge and all participants were deemed as winners for championing a good cause.
The initiative raised funds from cash donors such as Syarikat Pembenaan Yeoh Tiong Lay Sdn Bhd, Klanggroup Holdings Sdn Bhd, Biomarin Biotechnology Malaysia Sdn Bhd, Sanofi-Aventis(Malaysia) Sdn Bhd, Mah Sing Foundation and Mah Sing Healthcare Sdn Bhd while receiving support in kind from Oji Asia Household Product Sdn Bhd and McDonald’s Malaysia.
MLDA President Ir. Lee Yee Seng said, “We are grateful for the support we have received from the corporate and pharmaceutical sector as well as the public. Ride With Hope - Miku Challenge 2022 would not have happened without their support. I would like to urge for more members of the private sector to come forward to help us in this fundraising drive for Tabung Amanah because our young RD patients really need your help in their wellbeing and life-saving journey.”
32-year old Rachel Siew Suet Li who was diagnosed with MPS IVA (Morquio Syndrome) at the age of two shared, “Mike Challenge symbolizes HOPE that all individuals with RD have in creating the needed awareness for the public in getting a glimpse of our everyday life - our challenges and obstacles we go through to lead a purposeful life. The climb is not a choice, it’s our life daily.”
There are approximately 7,000 types of RD identified in the world and about 95% do not have a treatment or cure. At present, Malaysia does not have a cohesive and up to date registry and data on the number of RD and RD patients found in the Country. Among the many challenges this poses include but are not limited to inequitable access to medical treatment and intervention, escalation of caregiving and medical costs for those in need, socioeconomic and productivity impact to families and society especially when caregivers are forced to leave employment to care for loved ones living with RD, mental health, inclusive education and employment with dignity.
Photos
Dr Hirman Ismail, Deputy Director of Medical Development of MOH flags off eager participants
SPIRITED...children with rare diseases participated enthusiastically
(From left) President MRDS Nadiah Hanim Abdul Latif, Chairman RDAFM Dato Hatijah bt Ayob, Deputy Director of Medical Development of MOH Dr Hirman Ismail, President of MLDA Lee Yee Seng, Vice President PBNS Datuk Mohd Nazri Saad, President PWS Azhar Talib, Vice President Persatuan Lumba Basikal Negeri Sembilan – The societies handed over the RM100,00 cheque to MOH for Tabung Amanah Penyakit Jarang Jumpa
About Malaysia Lysosomal Diseases Association (MLDA)
MLDA is a non-profit organisation which advocates for patients’ rights to a sustainable health care and support system. It also raises the awareness of the general public about the life threatening Lysosomal Storage Diseases. There are about 50 different types of LSD diseases which mostly affect children who often die at a young and unpredictable age, many within a few months or years of birth. Eight LSD families gathered on 1 April 2011 and decided they needed to strongly advocate for a sustainable healthcare system for their children whose lives are held by a shoestring. This decision resulted in the formation of the Malaysia Lysosomal Diseases Association. For more information, visit https://www.mymlda.com/.
About Malaysian Rare Disorders Society (MRDS)
The Malaysian Rare Disorders Society (MRDS) is a non-profit organisation established since 2004 with the help and guidance of the Genetic Unit of the Department of Pediatrics, University Malaya Medical Centre, to represent and look out for the welfare and wellbeing of individuals and families living with rare disorders in Malaysia. MRDS advocates and champions for access to quality healthcare, inclusive education, employment opportunities and other areas relevant to enable the rare disorders community in Malaysia to live a life with dignity and wellbeing. The society also collaborates with stakeholders and the Government to drive and support the formulation and implementation of national policies, action plans and laws that are more inclusive related to rare disorders and persons with disabilities, as well as develop strategies and champion programs that focus on supporting and uniting the rare disorders community, patient groups and raising public awareness on rare disorders. For more information, visit http://www.mrds.org.my/ .
About Persatuan Sindrom Prader-Willi Malaysia (PWS)
PWS is a society to create network within patient and family. The objective is to establish network of association with organization, agencies and professionals involves in providing treatments, training and education to the patients. The organisation also works to provide accurate information and to create awareness to the public about the syndrome. The society also helps to provide practical support and assistance to individual and families affected by Prader-Willi Syndrome from treatment, rehabilitation, education and social aspect. For more information, visit https://m.pwsamalaysia.org.my/ .
For media enquiries, please contact:
Mr Lee Yee Seng, President of MLDA
019-271 4618, This email address is being protected from spambots. You need JavaScript enabled to view it.
Salina Abd Aziz, Iriis Mercury Comm Sdn Bhd
016-238 5014, This email address is being protected from spambots. You need JavaScript enabled to view it.