Projects
Patient Welfare Activities
PSOD Patient Welfare Activities
2007-JUNE 2009
July 2007
A medical mission was conducted for patients with Adrenoleukodystrophy (ALD), Gaucher Disease, Methyl Malonic Aciduria (MMA), Mucopolysaccharidoses (MPS Hunter Syndrome), Carbamyl Phosphate Synthase (CPS) Deficiency, Phenylketonuria (PKU), Maple Syrup Urine Disorder (MSUD), and Pompe Disease. A parent support orientation was also conducted as part of the one-day event aimed at providing the parents with knowledge on the rare diseases, basic care and occupational therapy of their children for daily living, and some tips on business opportunities. The medical mission and parent support orientation were joint projects of PSOD and the Institute of Human Genetics of the National Institutes of Health, University of the Philippines Manila.
August 2007
Thru the kindness and substantial donation of Zonta Metro Ortigas Chapter, headed by its then past president Ms. Malu Cortez and then current president Lizette Lim, PSOD was able to purchase 12 cases SHS-0876-1 MSUD ANALOG 400G as reserve MSUD formula which patients can buy at cost during emergency cases at the Institute of Human Genetics, NIH, UP Manila. Part of the purchased MSUD formula was immediately used to help save the lives of four (4) patients who were then in the intensive care unit of the Philippine General Hospital (PGH).
October 2007
Donation of six (6) wheelchairs to the following patients: four (4) with with MSUD, one (1) with CPS and one with MPS Hunter. The wheelchairs were courtesy of Congressman Ed Zialcita of Paranaque. They were turned over to PSOD thru Ms. Connie Zialcita-Trinos, president of the Rotary Club of Paranaque Southwest, and Mr. Joe Reano, president of the Rotary Club of Makati North.
April 2008
Thru the donation of Ms. Maricar Banaag who responded to a plea for help during GMA 7’s ‘Emergency’ feature on patients with MPS Hunter disease, PSOD was able to help subsidize the following:
May 2008
Consultation and lab exams (2D-echo, Optha works, BAER), of three (3) MPS Hunter Syndrome patients, as well as the Leucine monitoring subsidy of one (1) MSUD patient.
June 2008
Bone sotometry for twins with Gaucher; lab test for four (4) patients with MSUD and PKU; purchase of Salbutamol and Glocura milk for one (1) MPS Hunter Disease patient
June 2008
Bone Sotometry cost subsidy for twins with Gaucher; Lab test subsidy (NIH) for four (4) patients with MSUD and PKU; and Salbutamol and Glocura milk for one (1) MPS Hun-ter Disease patient
July 2008
Lab test at NIH for the four (4) patients with Galactosemia, MSUD and PKU
August 2008
Lab test at NIH for seven (7) patients with PKU and MSUD
September 2008
Lab test at NIH for eight (8) patients with PKU and MSUD
October 2008
Lab test at NIH for two (2) patients with MSUD
March 2009
Lab test at NIH for one (1) patient with MSUD
October 2008
Facilitation of C-PAP machine donation for MPS Hunter patient Jerich Duran from Tefa-Portanje (www.tefa-portanje.nl) and Dutch Neuromuscular Disease Association Netherlands thru the effort of Ms. Marize Schoneweld, a Pompe patient. PSOD sponsored the FEDEX remote pick-up fee and delivery.
