RIDE with HOPE - MIKU CHALLENGE IN CONJUNCTION WITH WORLD RARE DISEASE DAY 2022
- DATE: 12th of June 2022
Important Announcement :
Due to the safety concern on the recent outbreak of Covid-19 cases in Malaysia. We have decided to postpone the Physical Ride under Category 1,2 & 3 Miku-Challenge which original set on 13th Mar 2022 to another new date which will be announced at later stage. This is a difficult situation for us, as some of the participants are from rare disease patient family, therefore safety is our main concerns. We hope everyone will continue support us, we sincerely apologize for any inconvenience cause.
- VENUE: Dataran Rembau
- Officiated by: YB Tuan Khairy Jamaluddin, MP of Rembau, Health Minister of Malaysia
CATEGORIES:
Category 1- Ride with Hope (74km) (Registration Closed on 15th Feb 22)
Category 2- Ride with Hope (16km) (Registration Closed on 15th Feb 22)
Category 3- Ride with Hope/Fun Run/walk (1kmx N Loop)(Registration Closed on 15th Feb 22)
Category 4- Virtual Ride (30 km) (Registration still available, closing date is 1st March 22)
OBJECTIVES:
In conjunction with World Rare Disease Day 2022 (28 Feb 2022), Malaysia Lysosomal Diseases Association (MLDA) will be organising our pioneer Ride with Hope in Rembau together with the Malaysian Rare Disorders Society (MRDS), Persatuan Sindrom Prader-Willi Malaysia (PWS) and Persatuan Berbasikal Negeri Sembilan. The aim of the event is to create the needed awareness pertaining rare diseases (RD) in Malaysia. The total proceed raised will be contributed towards supporting RD patients in Malaysia as we strive to assist the RD community and patients in improving their quality of life.
Bkt Miku, Rembau, best known as one of the steepest hills in Malaysia has been selected as the event location. It will not only test the endurance level of both new and seasoned riders but also challenge participants' resolve and resilience. By participating, we hope that with each pedal stroke, the experience will help create awareness and act as a reminder of our RD individuals and their families as they continue to fight the good fight each day for equal rights and a life with dignity and wellbeing.
We are honoured to have YB Khairy Jamaluddin to grace this meaningful event by riding alongside our participants on event day.
REGISTRATION DATE:
- 1 January 2022- 15 Feb 2022 (Category 1, 2 and 3)
- 1 January 2022- 1 March 2022 (Category 4)
REGISTRATION FEE: RM80 (You can opt to get our “HOPE” mascot at additional RM 50/each)
About World Rare Disease Day
Rare Disease Day is the globally-coordinated movement on rare diseases, working towards equity in social opportunity, healthcare, and access to diagnosis and therapies for people living with a rare disease.
Since its creation in 2008, Rare Disease Day has played a critical part in building an international rare disease community that is multi-disease, global, and diverse– but united in purpose.
Rare Disease Day is observed every year on 28 February (or 29 in leap years)—the rarest day of the year.
Rare Disease Day was set up and is coordinated by EURORDIS and 65+ national alliance patient organisation partners. Rare Disease Day provides an energy and focal point that enables rare diseases advocacy work to progress on the local, national and international levels.
Every year, patient groups and stakeholders from Malaysia join forces with advocates from across the globe to raise a spotlight on issues faced by rare disease individuals and their families.
In December 2021, after years of collective advocacy the United Nations General Assembly passed by the first ever Resolution on the Rights of Persons Living with A Rare Disease and Their Families. This landmark effort was supported by all 194 member states of the United Nations.
About HOPE the Mascot for Muscular Dystrophy.
Sloth is a mammal known to be one of the slowest moving animal on earth due to its slow metabolisme akin to most of our RD patients with muscular dystrophy issues. Whilst the global mascot for all rare diseases is the zebra, the chosen mascot specifically for muscular dystrophy is the sloth. “HOPE”, a sloth plushie can be purchased and can tag along to accompany the participants as they ride at Bkt Miku.
President of MLDA Ir Lee Yee Seng took part in longest cycling event 1,200kM in 18 Aug 19 at Paris-Brest-Paris(PBP). The main objective of PBP with Hope piggy back right behind Ir Lee is to attract the public, media and the government about spreading awareness on rare disease and highlight the issue that we need a continuous funding support to prevent death resulting from any delay of treatment for every single rare disease patients in Malaysia.
- Early Bird Registration Close – 15 Jan 2022
- Registration Close (Category 1,2 & 3) – 15 Feb 2022
- Registration Close (Category 4) – 1 Mar 2022
- Ride With Hope (Category 1,2,3) – Date to be confirmed later
- Ride With Hope (Category 4) – 1 Feb until 31 March 2022 Any time Anywhere at your convenience
ENTITLEMENT:
- T Shirt Sublimation Jersey with Ride With Hope design
- Event Face mask with Ride With Hope design
- Finishing Medal
- E Cert
- Competitions Submission Deadline – 31 March 2022
- Shipping of Entitlements – Batch by batch after CNY 2022
All race packs shall be couriered to participants at a fee of RM10 (Peninsula Malaysia) or RM25 (East Malaysia). However, participants of Category 1, 2 & 3 have the option of self-collect their race pack at office of Persatuan Lumba Basikal Negeri Sembilan at National Velodrome Malaysia (Google Map - https://goo.gl/maps/uFvmrV3CtEmX9L476) from 11am-5pm on 11 March (Friday) & 12 March (Saturday). Participants also can self collect on event date 13 March start from 6:30AM. Pls contact the incharge person Pn Farhana 012-2809566