PSOD holds 2016 Christmas Party for rare disease patients and families

MAKATI CITY –With the theme, “Celebrating the Gift of Life with a Grateful Heart and looking forward to the New Year with Renewed Hope”, the Philippine Society for Orphan Disorders (PSOD) joined by volunteers from Eximius BPO Services, and the UP Pre-Medical Honor Society (UPPMHS) conducted its Christmas party for patients and their families last December 10, 2016 at the Society of St. Paul Seminary, Makati City. The fun-filled event was attended by 44 patient families.

The program commenced with the prayer led by Mr. Noynoy Suarez, a parent of a Cornelia de Lange syndrome patient and song by Osteogenesis Imperfecta patient Van Ryan Malud. PSOD President Mrs. Cynthia Magdaraog then addressed the participants and emphasized the party’s theme. She told the group that, hopefully, the implementing rules and regulations of the Rare Diseases Act will be approved by the Department of Health by February 2017 and in time for the observance of National Rare Disease Week. This is almost a year after the enactment of the law last March 2016.

Volunteers from the two partner organizations were indeed instrumental to the conduct of the event. Before the start of the event, members of UPPMHS managed the registration of the participants and entertained the kids with various interactive booths such as arts and crafts, music, dancing and basketball. On the other hand, the games, raffle, and afternoon program were facilitated by volunteers from Eximius BPO Services. Both volunteer groups, also gave gifts and toys to the PSOD kids. A magic and mascot show were also included in the program.

In a way of thanking and further inspiring the volunteers and the patient families in attendance, the PSOD kids sang “Isang Pamilya Tayo”.

Afterwards, the staff and support group leaders of PSOD surprised Mrs. Magdaraog with a token of appreciation for her dedicated service to the organization and her birthday next month. Ma’am Cynthia, as the group calls her, has been the President of PSOD since its formation in 2006. Patient support groups also gave messages that were delivered by their representatives.

In her response, the PSOD President thanked the PSOD staff, support group heads, volunteers, partners, and donors in making the first ten years of PSOD possible. She also acknowledged her family which has served as her inspiration and primary supporter in advancing the mission of the organization.

Mrs. Magdaraog also thanked Eximius BPO Services President and General Manager Mr. Javey De Venecia and his family for their support to the event. According to Mrs. Magdaraog, this is the third year that the company has sponsored and volunteered for the annual Christmas gathering. Similar to the families in attendance, Mr. De Venecia has a child with a rare disease. His daughter Kate was diagnosed with GM1 Gangliodosis, a rare disorder that progressively destroys nerve cells in the brain and spinal cord.

Mrs. Magdaraog also mentioned that she hopes that meeting and interacting with the PSOD kids have inspired the volunteers from UP PMHS. She also hopes for continuous partnership in upcoming activities between PSOD and the student organization.

According to UP PMHS President Ammiel Gulmatico, the organization started its rare disease advocacy with their Rett Syndrome Awareness Campaign, “RETTthink” that was launched last October during their 2016 PMHS Week. Furthermore, their participation to the PSOD party was a merger of their “Simpleng Handog” and “DRAFTS or Developing Relationships and Friendships Through Skills” activities. As part of Simpleng Handog, PMHS organized a toy donation drive, and prepared gift packs with basic medical supplies that were distributed during the event. The UP PMHS is an affiliate student organization of Volunteer Youth Leaders for Health (VYLH) – Philippines. #RPascual

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