RIDE with HOPE - MIKU CHALLENGE IN CONJUNCTION WITH WORLD RARE DISEASE DAY 2022

  • DATE: 13th of March 22
  • VENUE: Dataran Rembau
  • Officiated by: YB Tuan Khairy Jamaluddin, MP of Rembau, Health Minister of Malaysia

CATEGORIES:

Category 1- Ride with Hope (74km)
Category 2- Ride with Hope (16km)
Category 3- Ride with Hope/Fun Run/walk (1kmx N Loop)
Category 4- Virtual Ride (30 km)

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.

RIDE WITH HOPE - MIKU CHALLENGE 2022

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) – 13 Mar 2022 at Dataran Rembau 7am
  • 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 Stadium (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 : 

Competition Details

(Total 32 Prizes for 5 Categories of Competitions, participant can join more than 1 category but only 1 prize will be entitled for each participant, prizes details will be announced at FB page https://www.facebook.com/ridewithhope ):

  1. Best Photo Contest (Open to all Categories)
    • 5 prizes for all the 4 categories
    • Promoting WRDD 2022 in the most creative photo shots
    • Picture must be taken during the event with the event jersey
    • Participants to join this event by hashtag their photo with #MYMikuChallenge & #RideWithHope in FB or IG.
    • Winners will be announced in event page before 15th April 2022 after professional judge
    • Prizes will be couriered to winner after the contest.
  1. Best Video Contest (Open to all Categories)
    • 5 prizes for all the 4 categories
    • Promoting WRDD 2022 in the most creative Video shots
    • Picture must be taken during the event with the event jersey
    • Participants to join this event by hashtag their photo with #MYMikuChallenge & #RIdeWithHope in TikTok.
    • Winners will be announced in event page before 15th April 2022 after professional judge
    • Prizes will be couriered to winner after the contest
  1. Highest Elevation Ride Contest (Open to Virtual Rider only)
    • We’ve set 30kM as minimum distance for Virtual rider, however we encourage virtual riders to echo to our quest for Miku Challenge in your own area. Perform hill climbing ride and capture as much elevation as possible.
    • 6 prizes for  Category 4 Virtual Ride only , ie male(3 prizes) & female(3 prizes) respectively
    • Participants are required to submit their Strava result and sync to Checkpoint Spot page from 1.2.22 to 31.3.22. Highest  cumulative climb in meter will win attractive prizes.(Meaning you can ride everyday and syc your result to Strava on daily basis)
    • Organizer will verify the results from the 6 winners via their personal Strava account to verify their cadence & heartbeat. Participants who refuse to provide these information will be disqualify from this contest.
    • Result will be shown in Checkpoint Spot dashboard after 31.3.22.
    • Prizes will be couriered to winner after the contest
  1. Longest Distance Ride Contest (Open to Virtual Rider only)
    • We’ve set 30kM as minimum distance for Virtual rider, however we encourage virtual riders to echo to our quest for Miku Challenge in your own area. Perform longest distance ride and capture riding distance as far as possible.
    • 6 prizes for Category 4 Virtual Ride only , ie male(3 prizes) & female(3 prizes) respectively
    • Participants are required to submit their Strava result and sync to Checkpoint Spot page from 1.2.22 to 31.3.22. Longest cumulative distance in kM will win attractive prizes. .(Meaning you can ride everyday and syc your result to Strava on daily basis)
    • Organizer will verify the results from the 6 winners via their personal Strava account to verify their cadence & heartbeat. Participants who refuse to provide these information will be disqualify from this contest.
    • Result will be shown in Checkpoint Spot dashboard after 31.3.22.
    • Prizes will be couriered to winner after the contest
  1. Be A Fund Raiser (Open to all Categories)
    • Funds will be raised  to assist individuals with rare disease from life threatening chronic diseases.
    • Each participants  will be given a dedicated Ride For A Cause link via email upon successful of registration. We welcome all amount of donation, but only donation above RM 50 will be given tax exemption receipts. You can track the amount of donation raised at https://checkpointspot.asia/donation/miku-challenge
    • The Top 10 Fund Raiser in the League Table will receive prizes from the organizer.

Be A Fund Raiser

Funds will be raised to save individuals with rare disease from life threatening chronic diseases.

How to be a fund raiser?

  1. Register yourself in any one of the categories of this event.
  2. You will be given your personal Ride-for-a-Cause link. Share this link among your family and friends, to urge them to support your ride and MLDA.
  3. You can view the total amount that you have helped collect at https://checkpointspot.asia/donation/mikuchallenge

Top 10 Fundraisers will receive special prize from the organizer.

If you are not a participant, you can still donate under any of the participants by supporting them at https://checkpointspot.asia/donation/mikuchallenge

Donation of more than RM 50 will receive a tax exemption receipt from MLDA. The receipt will be issued and sent by MLDA directly to all donors at later date.

CHARITY OBJECTIVE:

TO RAISE FUNDS TO IMPROVE THE LIVES OF RARE DISEASE PATIENTS.

Advocacy video on Rare Diseases:

 

WHAT IS RARE DISEASE?

A rare disease is one which affects fewer than one in 4000 patients. Many rare diseases are fatal. Most rare diseases are genetic directly caused by changes in genes or chromosomes that affect the body's ability to produce enzymes or biochemicals needed for the body to function normally.

Rare diseases can affect people of all ages but they are often diagnosed at birth or during early childhood. Without treatment some conditions can be life-threatening. About one-third of patients with rare diseases globally do not live beyond five years old.

There are no treatments available for most rare diseases. But for a few effective medicines are available which can replace the missing enzymes or biochemicals. In such cases with early treatment patients' lifespans and quality of life will be greatly improved allowing them to live relatively normal lives.

Most rare diseases are life-long, without a cure or treatment and some can become debilitating over time. Nonetheless, rare diseases are not contagious, not the result of bad karma or Covid-19 vaccines and not the result of poor parenting.

For rare disease with medical interventions, some can be very costly and need to be taken throughout a patient's life. This places a heavy financial burden on the rare disease individuals and their families.

Just as every rare disease is unique, so is each individual patient. Patients with rare diseases can have a wide range of care needs, from regular medical consultations to home care support. While there are existing financial schemes available to help patients with some of these needs, more support is needed to help with the cost of their expensive medicines.

Ride Route

CATEGORY 1 – 74KM RIDE

RIDE WITH HOPE - MIKU CHALLENGE 2022 RIDE WITH HOPE - MIKU CHALLENGE 2022

CATEGORY 2 – 16KM RIDE

RIDE WITH HOPE - MIKU CHALLENGE 2022 RIDE WITH HOPE - MIKU CHALLENGE 2022

CATEGORY 3 – 1KM WALK/RUN/RIDE

RIDE WITH HOPE - MIKU CHALLENGE 2022

Participant Entitlements

All participants will receive the below items.

  • T-Shirt Sublimation Jersey
  • Event Face mask
  • Medal
  • E Certificate
  • E-bib (only for virtual ride participants)

Note:

  • All entitlements will be sent via courier to participants for a fee of RM10 (Peninsula Malaysia) or RM25 (East Malaysia).
  • However, participants of Category 1, 2 & 3 have the option to self-collect from office of Persatuan Lumba Basikal Negeri Sembilan at National Velodrome Malaysia (Google Map - https://goo.gl/maps/uFvmrV3CtEmX9L476). Collection date will be advised soon.
  • There will be no refund of courier fee if you have chosen courier option but decided to self-collect later.
  • You will be charged an administrative fee of RM10 apart from the courier fee, should you decided to change from self-collection to courier option at later stage.

T-shirt (Front)
RIDE WITH HOPE - MIKU CHALLENGE 2022

T-Shirt (Back)
RIDE WITH HOPE - MIKU CHALLENGE 2022

T-Shirt Size Chart
RIDE WITH HOPE - MIKU CHALLENGE 2022

Event Face Mask
RIDE WITH HOPE - MIKU CHALLENGE 2022

Medal
RIDE WITH HOPE - MIKU CHALLENGE 2022

E-Certificate
RIDE WITH HOPE - MIKU CHALLENGE 2022

E-Bib (for virtual ride participants only)RIDE WITH HOPE - MIKU CHALLENGE 2022

Hope Mascot

Please show your support by getting our Hope Mascot for RM 50/each when you register for the event.

We are selling our Mascot which is a sloth soft toy called 'Hope' for fund raising. The sloth is moving very slow hence it symbolic our patients whom mostly have slow movement due to muscular dystrophy. By selling ‘Hope” we can create awareness in the public at the same time raising more fund for our patients, we encourage riders to ride with ‘Hope’, which will make the entire event more meaningful.

RIDE WITH HOPE - MIKU CHALLENGE 2022

For Virtual Ride Participants

  • Ride Period: 1st February – 31st March 2022
  • Last day to submit results: 31st March 2022
  • We will only accept submission of ride completed during the event official Ride Period.
  • You can only use Strava app on your mobile phone to track your ride.
  • You can login automatically to your Strava account and sync your cycling records for submission to our leaderboard at https://vr.checkpointspot.asia

RIDE WITH HOPE - MIKU CHALLENGE 2022

Prizes

Prizes will be distributed according to the 5 competition categories at later stage once we received all the sponsorships:

RIDE WITH HOPE - MIKU CHALLENGE 2022 RIDE WITH HOPE - MIKU CHALLENGE 2022 RIDE WITH HOPE - MIKU CHALLENGE 2022

Event Terms & Conditions

Ride With Hope @Miku Challenge is organised by Malaysia Lysosomal Diseases Association and it is

  1. Open to all who are above the age of 18 and currently residing in Malaysia.
  2. No exchange or selling of event entry, the entitlement will be delivered to the mailing address provided in the registration form. In the event that there is a change of address, additional charges will incurred by the participant.
  3. All T-shirts measurement are subject to 1-2cm tolerance.
  4. All merchandises’ colour, design and material may be different from illustration and are subject to change without notice.
  5. Participants who are not fully vaccinated before 27th February 2022 (14 days before event date) will not be allowed to participate, entry slot will be withdrawn and no reimbursement/refund of the entry fee will be entertained.
  6. All Category 1,2 & 3 participants are required to assemble at Dataran Rembau at 6:45am on 13 March 2022. Briefing and body warming session will be held at 6:55am and flag off at 7am.
  7. The main organiser (MLDA) reserves the right to change the value of the prize, cancel the event due to unforeseen circumstances and all decisions made by MLDA is final.
  8. Submission of photo/video must be made before 31 March 2022.
  9. Once participants registration is done, there will be no reimbursement/refund of the registration fee will be entertained.
  10. By registering, you have impliedly given permission to allow us to add you into our Miku Challenge mailing list where we will be forwarding timely updates on everything relating to this event. You may unsubscribe from the Miku Challenge mailing list at any time by emailing us at enquiry.mlda@gmail.com.
  11. Participants must be certified fit to participate in this event. MLDA will not be liable for any accident, injuries or mishap that happened in the participation of the event.
  12. Participants agree to provide accurate, true, current and complete information about the Participants. Participants will be reached via e-mail or WhatsApp message.
  13. Any notice sent to the e-mail address registered with the Miku Challenge shall be deemed received by the Participant.
  14. MLDA has the right to suspend or terminate the Participant is suspected or have provided inaccurate, untrue, not current or incomplete information throughout the course of the event. Reimbursement/refund of any fee made will not be entertained.
  15. If there is a returned of parcel during the delivery of parcel, a subsequent delivery can be made (upon request) at the expense of the participant.
  16. Any address changes after registration will incur additional charges.
  17. MLDA reserves the right to use any photographs (including those of Participant), motion pictures, recordings, or any other media records of the Event, for any legitimate purpose including commercial advertising and distribution of MLDA.
  18. Do adhere to social distancing rules and all other prevailing laws of the country/state/local authorities. We are not liable for any breaches on your part.
  19. For virtual ride, an extra prevention precautions during this Covid-19 time, all participants need to obey the current SOP during all phases of the National Recovery Plan issued by Malaysian National Security Council. We are not responsible for any issues which may cause as a result of non-compliance to SOPs.
  20. To reduce close contact, we suggest every parcel to be couriered to all participants once full payment is made. Alternatively, participants can collect their parcel 1 week before the event day at Persatuan Berbasikal Negeri Sembilan office at Nilai Velodrom Stadium. Please indicate whether you prefer your parcel to be couriered or you will be collecting it from Persatuan Berbasikal Negeri Sembilan office for logistics purposes.
  21. Due to stringent SOP, we are limiting the number of participants to 500 for Category 1, 500 for Category 2 & 3 combined on first come first serve basis, but unlimited participants for Category 4.
  22. Only participants for Category 1,2 & 3 need to undergo Convid-19 RTK Antigen Saliva Self Test prior to event day & present the proof at the registration counter on the event day.
  23. MLDA has the rights to amend the Terms & Conditions at any time at its sole discretion without any prior notice.
  24. For other enquiries, we are reachable via email enquiry.mlda@gmail.com or WhatsApp +60196899620

Organiser Information

For any enquiries, please contact us at the following: -

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