VYLH-PHL joins"Jean/Gene" Ribbon Campaign: Raising awareness to the fullest

February marks another milestone for the Volunteer Youth Leaders for Health -Philippines after the network successfully participated in the 4th Rare Disease Awareness Week and the 6th International Rare Disease Day last February 28,2013.

The dynamic volunteers of VYLH-Mindanao led the advocacy campaign in different areas as far as the provinces of Surigao del Sur, Misamis Oriental, Bukidnon and Davao. Schools, communities and even the public and private sectors were engaged in this noble act of advocating. Among the activities conducted were radio plugging and airing of Philippine Society for Orphan Disorders or PSOD’s theme song “Lalaban Kami” in Radyo ni Juan, signature campaign for the enactment of Rare Disease Act of the Philippines, display of PSOD’s slogans and posters to various institutions as well as group lectures and room-to-room orientation to selected students of Xavier University, Central Mindanao University and community high schools in Davao. The event’s highlight was the denim ribbon distribution and wearing of maong jeans in solidarity with the Global Genes Project‘s “Wear that you Care” campaign during the Rare Disease Day.

The Newborn Screening Center-Mindanao employees, spearheaded by Dr. Abarquez, once again showed their support for the occasion by marking the special day as an official blue jeans day! The wearing of maong jeans and the pinning of denim ribbons signified the personnel’s call-for–solidarity with the campaign. The Southern Philippines Medical Center staff and employees and patients also joined the week-long PSOD video film showing, signature campaign, and lectures in the different areas like the OPD, SPMC lobby, OB and Pedia wards. With the theme “Rare Disorders without Borders”, this year’s main objective was to create awareness on the different orphan and rare disorders, not only locally but globally as well.

[For updating]

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Contributors: Aple Tadlas, RN (VYLH-Philippines Mindanao Secretariat)

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VYLH-Philippines joins Buntis Day 2013

MANILA - Volunteer Youth Leaders for Health (VYLH)-Philippines volunteers participated in the recently concluded Buntis Day activity by the Bayside Council on Obstetrics and Gynecology (BAYCOG) on March 10, 2013 at Robinson's Place Otis, Manila. 

Acknowledgements. VYLH-Philippines would like to thank Dr. Amelita Jover and BAYCOG. 

Participating volunteers: Romer Guerbo, Gessa Ramos, Kevin Lucas, Elmer Palomeno, Rufus Thomas Adducul, Ryan Pascual 

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The Preterm Problem (2)

Health Promotion Update No. 3 – Series 2012
Health Promotion and Advocacy Working Group
World Prematurity Day Primer 

The March of Dimes Infographic
Premature Births: Crisis, Care and Prevention

Reformatted from the original Infographic by March of Dimes (http://bit.ly/VyTqLK)

Key points presented:

• Number of premature births worldwide.
• Number of premature deaths in every 30 seconds.
• Childhood (under 5) mortality rates brought by AIDS, Malaria and Diarrhea as compared to deaths due to premature birth.
• The survival gap between low- and high- income countries
• Percent of preventable deaths (even without intensive care)
• Ways to prevent the increase in premature births:
• Raise awareness
• Educate girls and women
• Educate front-row workers
• Equip clinics
• Fund research

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The Preterm Problem

Health Promotion Update No. 3 – Series 2012
Health Promotion and Advocacy Working Group
World Prematurity Day Primer

Premature birth means a baby is born too early. Babies aren’t fully developed until at least 39 weeks of pregnancy. It is known that the development of the brains, lungs and eyes occur in the last few weeks of pregnancy. Worldwide, one baby in ten is born premature: Every year, about 15 million children are born too early.  Thus, preterm babies represent the largest child patient group and their number continues to increase (1).

In order to promote awareness about preterm births, as well as the problems and risks on the development of the premature infant, various international organizations such as the March of Dimes and European Foundation for the Care of Newborn Infants (EFCNI) have declared November 17 as the World Prematurity Day.

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A Day for Saved Babies

Ryan John Pascual (NCR-South Luzon), Ramzy Nuique (Visayas), Robin Charles Ramos (Mindanao)

"Saved babies" or the children with a genetic condition detected through newborn screening and consequently saved from death and mental retardation upon receiving the right and continuous treatment, were gathered in Quezon City, Dumaguete City and Davao City for the annual Reunion of Saved Babies. The event was organized by the respective Cluster Newborn Screening Centers (National Institutes of Health (NIH), Visayas, and Mindanao) in order to have a thanksgiving celebration with program partners, stakeholders, and beneficiaries for another year of continuous promotion of the government's newborn screening program.

The Philippine Newborn Screening Program supports the United Nations' Millennium Development Goal (MDG) 4 - reduction of child mortality.

Reunion of Saved Babies Visayas

Reunion of Saved Babies NCR-South Luzon

Reunion of Saved Babies Mindanao

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Understanding MSUD (Maple Syrup Urine Disease)

Health Promotion Update No. 2 – Series 2012
Health Promotion and Advocacy Working Group

Do you know that the newborn screening panel of disorders has been raised from five to six? 

Last May 2012, the Advisory Committee on Newborn Screening of the Department of Health approved the inclusion of Maple Syrup Urine Disease (MSUD) to the newborn screening panel of disorders. Its incidence rate which is higher than PKU or Phenylketunuria was one of the prime considerations for this move. According to the Newborn Screening Reference Center, there have been 101 cases of the disorder since 1992, and out of this number, only 26 are living.

Is there any change on the cost of NBS?

The Committee resolved that the offering of the additional test to all newborns will be done without any additional cost. Still, the newborn screening fee will be based on the maximum allowable cost for the NBS collection kit (filter card) and the maximum allowable service/collection fee by the health facility (50 pesos). The current NBS fee ranges from 550 to 600 pesos, as mandated by law. 

FAQs about Maple Syrup Urine Disease

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NBS Week 2012: A VYLH-Philippines Primer

For the past three years, VYLH-Philippines continues to uphold its commitment on one of its flagship advocacies – the promotion of public’s awareness on Newborn Screening  and its importance on saving babies from mental retardation. This is highly reflected in the activities conducted by the network in the national and local level. This primer aims to summarize the previous gains of the network related to its NBS advocacy, as well as present national and local plans for this year's NBS Week Celebration.

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Dr. Carmencita Padilla bags awards from DOST, UP

Dr. Carmencita Padilla
National Program Adviser, VYLH-Philippines
Chair, Department of Pediatrics, UP-CM
Director, NSRC-NIH, UP Manila
Executive Director, Philippine Genome Center
(Photo: IHG Website - ihg.upm.edu.ph)

 VYLH-Philippines celebrates the exceptional feats of Dr. Carmencita "Tita Menchit" Padilla, National Program Adviser, after becoming this year's recipient of  the following recognitions:

• Outstanding Science Administrator Award (Dioscoro Umali Medal) during the 2012 National Science and Technology Week organized by the Department of Science and Technology (DOST) last July 14, 2012.  

Excerpt from the NSTW Program: "In recognition of her outsanding leadership and commitment to uplifting the health and well-being of babies in the country as former Director of the Institute of Human Genetics, and present day Director of the Newborn Screening Reference Center at the National Institute of Health in UP Manila. Her initiatives in establishing the newborn screening project led to the enactment of a law on newborn screening which provides for the early diagnosis and treatment of babies with serious inherited conditions. She was instrument in setting-up the cytogenetics, newborn screening, biochemical genetics, and molecular genetics in NIH-UP Manila.  and new clinical genetic services at the Philippine General Hospital. Her expertise and research work has resulted in a large number of publications in local and international journals including some patents and copyrights."(1)

• Concepcion Dadufalza for Distinguished Achievement Award conferred by the University of the Philippines last September 18, 2012. The C. Dadufalza Award was established in June 2000 to honor individuals of distinction who has excelled in his/her craft, or who has contributed significantly to important causes in society. In a way, the award is also a means of remembering the selfless vision and values of the beloved UP professor. During the awarding ceremony, Dr. Padilla rendered a lecture entitled “Newborn Screening: Research to Policy Ideas, Successes and Continuing Challenges”. (2)

Tita Menchit, Congratulations! Your VYLH-Philippines Family is very proud of you! You are truly a great inspiration and role model for us Volunteer Youth Leaders!

Padayon, VYLH-Philippines.

References:

(1) UP Manila. Website Announcement.[link]

(2) InterAksyon. UP's Dadufalza lecture, September 18, UP Manila. [link]


Prepared by the VYLH-Philippines Advocacy and Health Promotion Working Group (AHPWG).

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