"I am Rare": VYLH-PHL UP Manila lights up charity drive for 'Rare' kids

Written by Feliss Sanchez 

Original Published in Newborn Screening

March-April 2015 Issue

In its commitment to empower the youth toward optimal health, the Volunteer Youth Leaders for Health–Philippines University of the Philippines Manila (VYLH-Philippines UPM) held "I Am Rare: Alone We Are Rare, Together We Are Strong", a pilot standalone advocacy project for children with rare disorders, at the Tipunan grounds, UP Manila, on April 25.

This year’s program gathered 40 kids from its affiliate institution, the Philippine Society for Orphan Disorders (PSOD). The day-long charity drive was held to uplift the children’s spirits by evoking physiological and psychosocial awareness for young patients with rare diseases. UP Manila Chancellor Dr. Carmencita D. Padilla, who is also the National Program Coordinator and Founding Adviser of VYLH Philippines, graced the event.

“Isa akong proud na Chancellor ng UP Manila dahil sa event na ito ay mabibigyan natin ng kasiyahan ang mga batang may rare disorders,” Dr. Padilla said in her opening remarks.

Orphaned by Society

According to Rufus Thomas Adducul, VYLH–National Capital Region (NCR)-South Luzon Cluster Coordinator, Filipino children born with rare diseases are usually “orphaned” by society through social abandonment and lack of medical help. In the Philippines, a disease is considered rare if it affects one in every 20,000 individuals or less.

Celebrating Bravery

VYLH-UPM Co-Project Head Feliss Sanchez said that UPM chapter’s “I Am Rare” program recognizes the kids’ courage in facing daily challenges and that was a success in terms of giving the children what they truly deserve.

“We did this event to celebrate the strengths of these rare kids who go through the daily struggles of rare diseases, to celebrate the childhood of these kids,” she added.

Together with Cluster Secretariat Marian Therese Cuenca and participating UPM student organizations, namely, UP Health Sciences & Pre-Medicine Society (HS+PM), ALAB and College Student Council of UP College of Public Health (CPH), AWSAMS and Volunteer Corps of UP College of Allied Medical Professions (CAMP), YEARN of UP College of Nursing (CN), ProPharm of UP College of Pharmacy (CP), Biological Sciences Society, Biochemistry Society, and OMAKE of UP College of Arts and Sciences (CAS), VYLH prepared several presentations and booths for the children.

Disney-themed characters presented different theatrical plays for the kids who were given “student buddies” to guide them throughout the day. Moreover, the UP College of Medicine Choir sang the national anthem, while UPM’s Indayog dance varsity, CAMP Synergy, and Pharm Jam also performed for the children.

Fight for Quality Life

During the commitment ritual led by National Secretariat Aster Lynn Sur, parents and guardians of the rare kids expressed their deepest gratitude to the National Institutes of Health (NIH), VYLH-Philippines, PSOD, and UPM students for inspiring the kids to fight another day.

“Malaki ang pasasalamat namin sa inyo dahil bilang isang magulang, basta makita namin silang masaya ay masaya na rin kami,” expressed a parent of a child with Gaucher’s disease.

To cap off the program, selected children performed a dance number to the tune of PSOD theme song, Lalaban Kami. The song encourages the children further to continue their fight for a better life.#

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To read more articles from the Official Bi-monthly publication of the Newborn Screening Reference Center, download the full issue of 'Newborn Screening' through the following link: March-April 2015 Issue

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VYLH, GeneSoc attend NAST RTD on Folic Acid

“We need folic acid.”

Participants of the NAST-DOST RTD on Folic Acid
(Photo: NAST-DOST)

Those were the words mentioned by UP Manila Vice-Chancellor for Research Dr. Eva Cutiongco-de la Paz as she concluded the Round Table Discussion (RTD) on Folic Acid hosted by the National Academy of Science and Technology (NAST) last June 23, 2015 at Hotel Jen Manila. 

The RTD on Folic acid focused on the importance of taking enough folic acid by all women in the reproductive age. Folic acid is a B-vitamin (Vitamin B6) that is important in the prevention of neural tube defects (NTDs) or problems in the development of the baby’s brain and spinal cord. It is recommended that all women in the reproductive age need 400 micrograms of the vitamin per day, while the dose increases by ten times for high-risk mothers such as those who had a child with an NTD (4,000 micrograms/day). 

Dr. Carmencita Padilla presenting the highlights of the
proposed bill on Folic acid supplementation and
mandatory fortification (Photo:NAST-DOST)

According to a NAST release, “the RTD acknowledged the role of different sectors in the drafting of the policy on Folic acid supplementation and food fortification”. In the RTD, invited experts discussed the burden of neural defects; the importance of folic acid supplementation to avoid NTDs; and the current local and global programs in food fortification. 

Highlights of the proposed legislation on folic acid, “An Act Establishing a Comprehensive Policy on achieving adequate intake of Folic acid through Fortification and Supplementation” were also presented in the RTD by NAST Academician and UP Manila Chancellor Dr. Carmencita Padilla. In her presentation, Dr. Padilla mentioned that “there are already many efforts addressing folic acid deficiency that only require coordination and support of policy…and when the bill will be passed, there are other challenges in implementing and monitoring it, but it is important to already start in crafting it (the bill)”. Dr. Padilla, also the focal person of the RTD, asked the audience to give their inputs and support to the bill. 

As representatives of the youth, members of VYLH-Philippines and The UPLB Genetics Society (GeneSoc) joined the Folic acid RTD. Aside from newborn screening promotion and rare disorder support, both organizations are involved in the campaign on increasing public awareness, especially among women in the reproductive age, on the importance of folic acid and its role on preventing neural tube defects.(RPascual; with reports from NAST-DOST)

The National Academy of Science and Technology, Philippines (NAST PHL) conducted the Roundtable Discussion on Folic Acid...
Posted by National Academy of Science and Technology (NAST), Philippines on Tuesday, June 23, 2015

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VYLH-Philippines extends its gratitude to NAST-DOST for considering the network as youth representative to this event. 

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VYLH celebrates 6th Founding Anniversary, launches “Dubsmash-for-a-Cause”

Last July 13-18, Volunteer Youth Leaders for Health (VYLH)-Philippines celebrated its 6th Founding Anniversary. The network held various social media activities: "Heart of a Volunteer Monday", "Advocacy Tuesday", "Jumpshot Wednesday", Dubsmash Thursday", "Fansign Friday" and "Skype Dinner Saturday". The Skype “Pasasalamat” Dinner is an annual dinner-celebration held in key cities such Manila, Cebu and Davao which are connected through Skype. 

#DubsmashForACause

How to join #DubsmashForACause
(Photo: VYLH-Philippines)

Dubsmash is a free video messaging application for smart phones. The application allows users to choose an audio recording and record a video of themselves dubbing the chosen piece. Volunteers were invited to use the popular app Dubsmash and post their videos through their social media accounts with the hashtags #DubsmashThursday, #DubsmashForACause and #TatakVYLH.

Since 2009, VYLH-Philippines has used social media and the internet in connecting the network and its volunteers. Every year, the network innovates and adapts to popular trends among social media users. This year's activity is an example on how a popular app can be used not only for entertainment, but also in the service of the advocacy.

Looking Back

Founded on July 18, 2009, VYLH-Philippines is the result of the collaboration between the Institute of Human Genetics (IHG)-NIH, UP Manila, the Department of Health and The UPLB Genetics Society, a student organization from UP Los Baños. VYLH-Philippines is a network of youth leaders and youth organizations based in schools and communities throughout the country that will champion in increasing public awareness on existing health programs and on the significance of a healthy lifestyle at an early age. 

Through the years, the network has conducted national leadership congresses, regional and island-wide youth camps, and youth leader orientations. As of present, VYLH-Philippines has trained more than 500 volunteer youth leaders representing more than 170 youth organizations nationwide. They conduct year-round health promotion and advocacy projects directed towards the promotion of folic acid supplementation, prematurity awareness and newborn screening. The network is also in the forefront of gathering public support for the passage of the Rare Disease Act, an act addressing the needs of Filipino rare disease patients.(RPascual)

Visit fb.com/vylhphilippines and vylhphilippines.blogspot.com for more details or follow us @vylhphilippines for updates.

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DOH-NCR launches "Newborn Screening Jingle Video-Making Contest"

REPOST (Updated)

Newborn Screening NCR/

Newborn Screening Reference Center

The Department of Health National Capital Regional Office is giving the college students the chance to showcase their own interpretation of "Blessing Ka Baby", the newborn screening jingle through a unique music video.

This Jingle Video Making Competition is part of the Newborn Screening Advocacy Activities for the National Capital Region, aiming to increase the awareness not only of parents but all men and women of reproductive age about the importance of Newborn Screening and how it saves babies from mental retardation and death.

Interested parties need to request for the jingle by sending an email to nbs.dohncr@hotmail.com. Interpret the jingle using your own music video, then submit entries in digital format, saved in a CD or DVD on or before 25 March 2016, 5:00 PM October 23, 2015, 5:00pm to:

Department of Health -
National Capital Regional Office 

Blk 6 Barangay Road WelfareCompound, Brgy. Addition Hills, Mandaluyong City 

Tel. Nos: 531-0021, 531-0027, 531-0034 local 105

Cash prizes await the Top Three (3)
Best Video finalists:First Place: Php40,000.00
Second Place: Php30,000.00
Third Place: Php20,000.00

The following are the important dates for the contest:

Deadline for submission of application/contest entry forms:

26 February 2016 (11 September 2015)

Deadline for submission of video (CD/DVD):

25 March 2016, 5:00 PM (23 October 2015, 5:00 PM)

Announcement of Top Finalists: 

To be announced November 2015

Awarding Ceremony: 

To be announced 20 November 2015

In 2014, VYLH-Philippines made a lyric video of the jingle in celebration of Newborn Screening Awareness Week. The jingle was commissioned by DOH National Capital Regional Office and composed by Mr. Lloyd Oliver Corpuz.

For the full contest mechanics and criteria for judging, please use this Google Drive link (Contest Mechanics from DOH-NCR).

Reminder: Interested individuals of groups should request the Official competition copy of the NBS Jingle from the DOH-NCR Regional Office. The VYLH-Philippines lyric video was embedded for preview and information dissemination purposes only.

Disclaimer: VYLH-Philippines has voluntarily helped the organizers in the promotion of this contest. It's members and their organizations are still allowed to join this competition. Affiliation to VYLH-Philippines does not have any bearing in this competition. 

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#DubsmashForACause: VYLH-Philippines celebrates 6th Founding Anniversary

In celebration of its 6th Founding Anniversary, members of Volunteer Youth Leaders for Health - Philippines were invited to use the popular app Dubsmash and post their videos through their social media accounts with the hashtags #DubsmashThursday, #DubsmashForACause and #TatakVYLH. Dubsmash is a free video messaging application for smart phones. The application allows users to choose an audio recording and record a video of themselves dubbing the chosen piece. 

#DubsmashThursday is one of the social media activities included in this year's week-long celebration which will culminate on July 18 (Saturday) with the Annual "Skype"-Pasasalamat Dinner. 

Through the years, VYLH-Philippines has tapped social media and the internet in connecting the network and its volunteers. Every year, the network innovates and adapts to popular trends among social media users. This year's activity is an example on how a popular app can be used not only for entertainment, but also in the service of the advocacy. 

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NSRC releases list of facilities offering Expanded Newborn Screening

Expanded Newborn Screening is NOW AVAILABLE.
(Photo: Newborn Screening Reference Center,
@newbornscreenph)

The Newborn Screening Reference Center (NSRC) has released a list of facilities offering Expanded Newborn Screening (eNBS). Early this year, the expanded NBS program started and this allowed the screening of hemoglobinopathies and additional metabolic disorders, namely organic acid, fatty acid oxidation, and amino acid disorders. All these conditions can be treated at birth, avoiding complications of no treatment.

(Read: All Set for Expanded Screening Program)

Expanded newborn screening is optional. This makes newborn screening to be offered to parents in all participating facilities with the following options:

Option 1: Six (6) disorders (CH, CAH, GAL, PKU, G6PD, and MSUD) at P 550.

Option 2: The full complement of the disorders at P 1,500

The cost of newborn screening, which is now at P 550, is presently included in the newborn care package for members of PhilHealth.

MedTalk (Solar News/9 News and Current Affairs/CNN Philippines)

The following is the list of Newborn Screening Facilities offering Expanded Newborn Screening as of October 2015.

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Milestones: Celebrating 20 years of NBS in the Philippines

Photo: VYLH-Philippines
(Unofficial Commemorative Logo)

2016 marks the 20th year since the pilot implementation of the Philippine Newborn Screening Program then known as the Newborn Screening Study Group of the Institute of Human Genetics - NIH, UP Manila.

Join us as we discover the steps and leaps taken in order to reach the NBS program of today - the same program that has saved and has been saving lives of Filipinos from death and mental retardation.

Milestones in the history of newborn screening in the Philippines

1996

22 February First organizational meeting attended by representatives from Philippine Pediatric Society (PPS) accredited and Philippine Obstetrical and Gynecological Society (POGS) accredited hospitals in Metro Manila

02 April Creation of the NBS Study group composed of pediatricians and obstetricians from pilot hospitals. Project name: Philippine NBS Project 

27 June Commencement of the Philippine Newborn Screening Program (PNSP). NBS Samples were sent daily to the New South Wales NBS Program in Australia for test performance and analysis.

1997

18 September Start of operation of the NBS Laboratory at the NIH

1999

March Inclusion of NBS in Children’s Health 2025 

30 July Creation of the DOH Task Force on NBS composed of representatives from DOH, Institute of Human Genetics-NIH, DILG and other health groups.

2000

3 January Issuance of Administrative Order No 1A s 2000 by the DOH stating the Policies for the

Nationwide Implementation of NBS

2001

07 February Issuance of Department Order No. 29-C s, 2001 by DOH Subject: Creation of the National Technical Working Group on NBS Program, tasked to provide direction and guidance for the nationwide implementation of the NBS program.

2003

April NBS bills filed at Congress 

May NBS bills filed at Senate

9 December Issuance of DOH Administrative Order No 121, s2003, Subject: “Strengthening Implementation of the National NBS System

2004

20 January Issuance of the Presidential Proclamation No 540 entitled “Declaring the First Week of October of each year as “National NBS Awareness Week”

07 April Enactment of Republic Act No 9288 known as the Newborn Screening Act of 2004

05 October Signing of the Implementing Rules and Regulations of the Newborn Screening Act and signing of the Memorandum of Agreement for the creation of the Newborn Screening Reference

Center (NSRC) by the DOH and UP Manila

2005

02 December Opening of the 2nd NBS Center at West Visayas State University Medical Center

2006

22 January NBS included in licensing requirement of Philippine hospitals; 90% of NBS fee covered by national health insurance

2007

January 2 Offering of Scholarships for Genetics and Endocrinology for Regions without specialists

2008

12 June Issuance of DOH Memo No. 2008-0123 imposing the following targets: 30%-2008, 50%-2009 and 85% by 2010

08 August Issuance of AO No. 2008—0026 and 2008-0026A by DOH imposing penalties for non-implementation and/or overpricing of NBS

2009

January Creation of Expert Panel Committees

July Creation of National Follow-up Committee
July 18 Institution of Volunteer Youth Leaders for Health - Philippines, a national collaboration of youth leaders of youth organizations from universities and communities throughout the Philippines.

September Opening of Newborn Screening Center in Mindanao (3rd NBS Center)

2010

October Opening of the 4th Newborn Screening Center in Central Luzon

2011 

Streamlining and Revision of the Philippine Performance Evaluation System (PPEAS)

February Creation of the Committee on Use, Retention and Storage of Residual Dried Blood Spots for policy recommendation

Unbundling of the NBS from the other services in the Philhealth Newborn Care Package

June Offering of MS Genetic Counseling Program at the PGH- Department of Pediatrics, UP College of Medicine, University of the Philippines Manila

2012

March Creation of the Technical Group on Expanded Newborn Screening

October Inclusion of MSUD in the Panel of Newborn Screening 

2013

September Opening of the 5th Newborn Screening Center in Southern Luzon servicing to Region IV-A. Samples from Region IV-B, V and the National Capital Region are processed at NSC-NIH.

2014

October 30 Issuance of DOH Administrative Order (AO) No. 2014-0035 or the Guidelines on the Setting-up of Newborn Screening Continuity Clinics.The order provides for the setting up and implementation of NBS Continuity Clinics and Birth Defects Continuity Clinics for referral and management of all screened-positive newborns.

November 19 Issuance of DOH Administrative Order (AO) No. 2014-0045, or the Guidelines on the Implementation of the Expanded Newborn Screening Program which laid down the rules and procedures on how the expanded newborn screening should be implemented on all levels, including local, regional, and national.

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Newborn Screening Reference Center. Program Briefer as of December 2012. 

Padilla, C. et al. 2009. Newborn Screening Research to Policy. Acta Medica Philippina 43(2).

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