Rare Parkinson's Heroes Who Changed the World
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Total funds raised for Lloyd Tan Parkinson’s Trust Fund

Updated as at 28 December 2009

 
Total amount (RM)
Cash donations to Lloyd Tan Parkinson’s Trust Fund
18,541.00
Sale of “Selfless Warrior” books (242 copies sold)
48,400.00
Sale of “A Better Tomorrow” books (99 copies sold)
7,920.00
Sale of “Hero Teo” books (30 copies sold)
1,453.00
Sale of “A Glimpse of the Past” books (19 copies sold)
724.00
Total
77,038.00

Parkinson’s Disease is a progressive and incurable illness of the brain. Despite optimal medications, the physical disability of patients continues to deteriorate. With increasing number of years of treatment, the dyskinesia (involuntary body movements that occurs as a side effect of medications) becomes more frequent, and adds to the sufferings of most Parkinson’s patients. As such, in the advanced stage of Parkinson’s Disease (10-15 years after the onset of illness), the quality of life is significantly impaired.

The DBS surgery is indicated for the treatment of advanced stage of Parkinson’s Disease, as it improves the symptoms of Parkinson’s Disease, dyskinesia and quality of life.

However, the main limiting factor for the DBS surgery is its expensive cost, which most Malaysian Parkinson’s patients cannot afford. At present, the cost of DBS surgery in the Malaysian government-funded hospitals is about Ringgit Malaysia Eighty Five Thousand Only (RM85,000.00) for the first surgery, and another Ringgit Malaysia Sixty Five Thousand Only (RM65,000.00) for the replacement of pulse generator (battery) once every three (3) to five (5) years.

The Lloyd Tan Parkinson’s Trust Fund has been set up on 9th May 2008, with the HSBC (Malaysia) Trustee Berhad as its sole Trustee. The original spirit and philosophy for the creation of the Lloyd Tan Parkinson’s Trust Fund is to make the prohibitively expensive Deep Brain Stimulation (DBS) surgery to be available to the lower-income group of Parkinson’s Patients in Malaysia.

The source of funds to the Lloyd Tan Parkinson’s Trust Fund is strictly from donations, raised from various fund-raising activities that are organised by the Negeri Sembilan Parkinson’s Society, using the name of “Lloyd Tan Parkinson’s Trust Fund”, with prior approval obtained from the Trustee. These fund-raising activities must be educational in nature, that will create public awareness on Parkinson’s disease and the full accounts of all the fund-raising activities must be published with completely open transparency in the website and in all other forms of reports.

Eligibility criteria

Qualified Parkinson’s Patients means Parkinson’s Patients, who have been assessed and confirmed by the Working Committee and an Independent Neurologist, to have all of the following features: –

  1. *advanced stage of Parkinson’s Disease (at least ten years of disease duration);
  2. Significant Financial Constraint;
  3. fulfill ALL the inclusion and exclusion criteria for DBS surgery;
  4. Malaysian citizens or permanent residents;
  5. have never undergone the DBS surgery or any other types of brain surgery as a specific treatment for Parkinson’s Disease (e.g. pallidotomy);
  6. posses the documents that unequivocally show that they have exhausted all means in obtaining financial assistance from their present or previous employers (regardless of governmental or private organizations); and
  7. Independent from any of the members of the Working Committee (of the Lloyd Tan Parkinson’s Trust Fund), Neurologist, Neurosurgeon and hardware supplier.

*An exception is the relatively young Parkinson’s Patients (aged 50 years or less), whose career is significantly impaired, and who also fulfill all the criteria from (b) to (g) above, but not necessarily criterion (a).

 

The financial assistance

The financial assistance by the Lloyd Tan Parkinson’s Trust Fund covers only sixty percent (60%) of the total cost of the hardware (pulse generator and electrodes) for the first surgery, and another forty percent (40%) of the total cost of the hardware (pulse generator) for the subsequent surgery.

Each Parkinson’s Patient is eligible to receive financial assistance from the Lloyd Tan Parkinson’s Trust Fund only for a total of two occasions (the first brain surgery when the electrodes and pulse generator are implanted, and the second surgery when the pulse generator is replaced).

The Lloyd Tan Parkinson’s Trust Fund will not pay any other costs pertaining to medications, doctors’ medical fees, hospitalisation, accommodation, any form of complications of the DBS surgery or complications of the replacement of the pulse generator and other incidental costs required to be incurred pursuant to the DBS surgery or replacement of the pulse generator.

No monies will be transferred to the Parkinson’s Patients and Caregivers. Payments from the Lloyd Tan Parkinson’s Trust Fund will be made directly to the supplier of the hardware.

The DBS surgery and replacement of the pulse generator must be undertaken in a government-funded hospital.

 

Terms and conditions

For both the Deep Brain Stimulation surgery and replacement of the pulse generator, the Parkinson’s Patients, Caregivers, family members of the Parkinson’s Patients, doctors and supplier of the hardware must agree to allow ALL the following details to be published with completely open transparency, in the parkinsoninfo website and in all other forms of reports:

  1. name, profession and age;
  2. combined income of the Parkinson’s Patients, Caregivers and family members of the Parkinson’s Patients;
  3. the medical reports of the Independent Neurologist, and the Neurologist and Neurosurgeon who performed the DBS surgery, together with the MRI brain scans (both before and after surgery);
  4. invoices by supplier of the hardware and the amount of financial assistance paid by the Lloyd Tan Parkinson’sTrust Fund;
  5. details of the government-funded hospital where the DBS surgery or replacement of the pulse generator was undertaken, together with the report of the medical director of the said hospital;
  6. photographs and/or video clips of the Parkinson’s Patients, that will illustrate the benefits of the DBS surgery or replacement of the pulse generator; and
  7. any other forms of reports that are produced pursuant to the financial assistance and the DBS surgery or replacement of the pulse generator.

 

Breach

If there is any evidence that the said Parkinson’s Patient has breached any one of the conditions and eligibility criteria stated above, the Trustee is at liberty to take any of the following actions upon seeking legal advice:-

  1. to institute legal proceedings against the said Parkinson’s Patient and/or doctors (Neurologist and Neurosurgeon who performed the Deep Brain Stimulation surgery) to recover the total sum of the financial assistance provided by the Lloyd Tan Parkinson’s Trust Fund for the said Parkinson’s Patient; and/or
  2. to publish a complete report on the breach of agreement, including the identities of the Parkinson’s Patient and doctors (Neurologist and Neurosurgeon who performed the Deep Brain Stimulation surgery) in the website and in all other forms of reports; and/or
  3. to submit a complete report on the breach of agreement to the medical association (or council) of the country where the doctors (Neurologist and Neurosurgeon of the hospital where the Deep Brain Stimulation surgery is carried out) are practicing.

 

How to submit your application?

You can download the application form and when completed, fax it to +603-40240060. A Neurologist is required to fill in the medical report (Section C) in the application form.

 

The application process

Your application is first reviewed by the Independent Neurologist. Applicants who passed the preliminary screening will be further assessed by the Working Committee of the Lloyd Tan Parkinson’s Trust Fund and Independent Neurologist.

If you have any enquiries, you can contact Patricia Ho at +603-40240060 or send your email to: [email protected].