10 Life Lessons from Dr. Carmencita Padilla

The following is the transcript of the speech delivered by Dr. Carmencita David-Padilla, Professor and Chancellor of UP Manila, during the Commencement Exercises for Residents and Fellows of the Department of Pediatrics, UP-Philippine General Hospital last December 12, 2014.  

Dr. Carmencita David-Padilla
Professor, UP College of Medicine
Chancellor, UP Manila
National Program Adviser of  VYLH-Philippines

Our dear faculty led by our Department Chair Juliet Sio-Aguilar, parents and guests and our dear graduating residents and fellows, good morning.

The graduating residents were my first year residents in my last year as Chair of the Department. I am very proud of what you have become. My son Patrick, who is a clinical clerk has voted our Department as one of the best and has become his benchmark when he rotates in other departments. He does not really want to become a pediatrician but because of the faculty and the residents he worked with, he has considered Pediatrics as an option.

Your invitation today gave me the opportunity to reflect on my life. It is good to stop and reflect on one’s past.

I have many stories to tell but today, I would like to share 3 short stories with 10 life lessons.

The first story is on how I became a geneticist.

Early on, I wanted to become a doctor and to be specific, a pediatrician. Nursery was my first rotation and I fell in love with the field. I decided that I wanted to become a neonatologist. By my third year in residency, I had a collection of books in Neonatology. I was ready.

Everything was clear and set for my training in London when the lone geneticist in the Department unexpectedly died of cancer leaving a vacuum in our department.

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NAST-PHL: Rare Diseases to be part of the country’s Universal Healthcare

REPOST

Original Article A. Manuel

Published Online NAST-Philippines

“There is a need for a policy to address the needs of the persons with rare diseases”, said Acd. Carmencita Padilla. during the Roundtable Discussion (RTD) on Rare Diseases last October 30, 2014 at Traders Hotel, Manila. The RTD was organized by the National Academy of Science and Technology, Philippines (NAST PHL) through its Health Sciences Division (HSD).

The scenario of rare diseases in the country was reviewed on a global and local scale by Dr. Mary Anne Chiong, a biochemical geneticist from the National Institutes of Health, University of the Philippines Manila. According to Dr. Chiong, the definitions of rare diseases vary depending on the number of incidences in a country. Globally, 350 individuals are diagnosed with rare diseases. However, according to the World Health Organization (WHO), orphan disorders, another name used to refer to rare diseases, occur in 6.5-10 out of 10,000 population. It is estimated that there are more than 7,000 different types of orphan disorders. In her presentation, the country’s situation and challenges in caring for these patients were assessed. She identified the challenges as delay in diagnosis, misdiagnosis, limited and high-cost of scientific treatment, and the social and emotional burden on patients and family with rare diseases.

Mr. Juan Benedicto K. Magdaraog, a patient with Pompe Disease, also served as a speaker. He shared his life with Pompe disease and the rare disease’s impact on his childhood, his well-being, as well as on his dreams and aspirations. He shared his story of overcoming many limititations and moving forward despite Pompe. Mr. Magdaraog, also called “Dickoy”, expressed his will to “change how people perceive people with rare diseases”.  He is a graduate of a degree in Industrial Design from College of Saint Benilde, De La Salle University and is currently working as a front-end web designer of an IT company.  

The RTD briefed the various stakeholders on the elements of the Rare Disease Act through the video of Senator Pia Cayetano’s privilege speech at the Senate of the Philippines last September 3, 2014. One highlight of the bill is allocating a portion of the RA 10351 or the Sin Tax Reform Act to health services for patients with rare diseases.

Acd. Padilla, a member of the Health Sciences Division of NAST PHL and focal person of the RTD, gave an in-depth discussion of the Rare Disease Act. The main objective of the bill is to ensure that patients with rare diseases have access to health information and medical care, including medication for their condition, and thus, will be recipients of the country’s universal health care. She also emphasized the role of different government agencies in the implementation of the bill — the Department of Health will lead this effort, while Food and Drug Authority (FDA) will review and approve the needed drugs. The National Institutes of Health (NIH) will provide technical assistance. On the other hand, the Department of Interior and Local Government (DILG) will involve the LGUs and the Department of Education will ensure health education on Rare Diseases. The Department of Social Welfare and Development (DSWD) will take care of the welfare of the people with rare diseases, including their families and Department of Labor and Employment (DOLE) will support the provision of jobs for people with rare diseases. Lastly, DOST will have a major role of providing research funding for diagnostics and development of low cost medications and products for these patients.

Read the Full Article (nast.ph)

___________________

Volunteer Youth Leaders for Health-Philippines received an invitation from NAST-Philippines. The network was represented by members from the NCR-South Luzon Cluster.

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DOH-NCR releases NBS Week 2014 Jingle "Blessing ka Baby"

The Newborn Screening Jingle "Blessing Ka Baby" was composed by Mr. Lloyd Oliver Cruz and commissioned by the Department of Health - National Capital Region Office (DOH-NCRO). The jingle was released in 2014, as part of the Newborn Screening Week celebration. 

VERSE 1

Mula sa sinapupunan

Siyam na buwan ka naming inalagaan

At ngayon nandito ka na

Di ka namin pababayaan.

CHORUS

Oh aming baby, isa kang blessing

Kaya dapat

Magpa-newborn screening.

VERSE 2

Love na love ka namin

Kaya ito gagawin

Para sa kalusugan mo

Dapat natin itong sundin.

CHORUS

Oh aming baby, isa kang blessing

Kaya dapat

Magpa-newborn screening.

BRIDGE (RAP)

Napakadali ng process

Na mag pa-NBS

Ilang patak ng dugo ang kailangan

Para magawa ang test

Makalipas ang 24 ORAS pag si baby lumabas

Gawin natin ang NBS, alinsunod sa batas.

CHORUS

Oh aming baby, isa kang blessing

Kaya dapat

Magpa-newborn screening

Para sa’yo rin ito, sa kalusugan mo.#

Lyric video by VYLH-Philippines
(Updated September 2015)

*Graphics and clips were obtained from the Newborn Screening TV Ad (https://youtu.be/SXOvbEH36mU) produced by the Institute of Human Genetics-National Institutes of Health, UP Manila (IHG-NIH, UPM). 

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VYLH-Philippines introduced in 9th MSS

Written by Ramzy Nuique and Ruffus Adducul

NCR-South Luzon Cluster

Attendees of 9th MSS visiting the VYLH-Philippines Booth

MANILA - The Volunteer Youth Leaders for Health (VYLH) - Philippines NCR-South Luzon Cluster organized a VYLH Booth during the 9th Medical Students Summit (MSS) held on September 06-07, 2014 at San Beda College, Manila. With the theme: “Catalyzing Social Transformation Through Medicine”, the summit  showcased various organizations and groups that underlines health causes and advocacies, one of which is VYLH-Philippines.The MSS is an annual event spearheaded by the Association of Philippine Medical Colleges - Student Network (APMC-SN).

Brochures regarding the three advocacies of the network namely folic acid awareness, newborn screening awareness, and rare disorders, were given to the attendees of the said event. Sign-up sheets were also provided for medical students who are willing to know more about the organization and are interested to become a part of the network. 

VYLH-Philippines volunteers during the 9th MSS

VYLH’s success stories, advocacies, best practices, and fun stories of volunteers were also shared to curious students through casual talks and a brief sharing. The said event was attended by VYLs who are also medical students. The summit served as a great opportunity for them to rekindle their commitment as a VYLH-Philippines volunteer.

________________

Editor Joan Barredo (NCR-South Luzon Cluster PIRO)
Photo credit Ramzy Nuique

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VYLH volunteers represent PHL in Int’l Youth Leadership Workshop

Written by Ryan John Pascual
NCR-South Luzon Cluster

Participants, Organizers and Speakers of the First iYouLead Training-Workshop held last August 10-17, 2014.  (Photo credit: iYouLead Organizing Committee)

BOGOR, INDONESIA – Two Volunteer Youth Leaders for Health (VYLH)-Philippines volunteers, Floyd Edrea and Ryan Pascual, represented the country for the First International Young Food and Nutrition Leadership Training Workshop, also dubbed as the iYouLead, held last August 10-17, 2014. Organized by the pioneer batch of Indonesian youth leaders (DoYouLead), Pergizi Pangan (The Food and Nutrition Society of Indonesia), Federation of Asian Nutrition Societies (FANS) and the International Union of Nutritional Sciences (IUNS), the workshop was attended by a total of 107 youth leaders coming from different parts of the world: Indonesia, Australia, Ethiopia, Kenya, Malaysia, Mali, Myanmar, Uganda, Vietnam and the Philippines.Various social programs and trainings were held in four different locations namely Bogor, Bandung, Jakarta, and Yogyakarta, Indonesia. 

With the theme “Strengthening Youth Capacity for Future Global Leadership on Nutrition, Food and Health”, the iYouLead aimed to channel experiences and build camaraderie among young nutritionists, food scientists, and medical doctors—the future leaders in the field of nutrition, food, and health. This gathering also served as an avenue for the formation of a global network of young leaders to strengthen the aforementioned areas, as well as develop their capacity in advancing nutrition, food, and health in the local and international scale. The workshop also paved the way for government and industry leaders, key players from global organizations, and experts from the field to share their best practices and leadership experiences. According to the organizers, increasing the participants’ understanding in nutrition, food, and health issues in a holistic perspective will allow them to administer solutions that are innovative, effective, and sustainable.

Excellent training locations

In Bogor, the training program included lectures on leadership, nutrition, and the food industry which was led by local and international experts. Discussion groups formed an essential part of the lecture, as well as the session on the formation of a binding organization or forum for the attendees of the said event. 

The social program, on the other hand, included exposure trips in different manufacturing plants of industry partners located in Bandung, Jakarta and Yogyakarta. The company visit also included a presentation of the company’s profile and efforts related to community nutrition through theircorporate social responsibility (CSR) program. The training workshop culminated with the group visiting various heritage sites and having a farewell party in Yogyakarta.

 

Key players in the workshop

Twenty-five government and industry leaders coming from Indonesia and the Southeast Asian region were invited to grace the event. Among the august slate of speakers were the former IUNS President and Professor Mark Wahlqvist, the current IUNS vice-president Dr. V. Prakash, Federation of Asian Nutrition Societies (FANS) president Ms. Pek Yee Chow, Chairman of the Southeast Asia Public Health Nutrition Network (SEA-PHN) Dr. Tee Siong, President of the Food and Nutrition Society of Indonesia Prof. Hardinsyaw, and World Food Program Senior Adviser Dr. Martin Bloem.

Notably, the Director General of Maternal and Child Health of the Indonesian Ministry of Health  Dr. Anung Sugihantonio Kes posted a challenge to the iYouLead participants. The challenge included three tasks: (1) support the national movement for nutrition improvement in the first 1000 days of life, (2) develop nutrition messages that can be used in the community, and (3) conduct research in nutrition problems and non-communicable diseases. 

Recurring health and nutrition matters

Other than providing an overview on the advancements in food and nutrition, three recurring themes were also highlighted in the program. The first one is about the notion that food, nutrition and health are interrelated. Second, there is a global effort on investing and improving child health during the first 1000 days after birth which is participated by the public and private sector in various societies. Scaling up Nutrition, also known as the SUN program, aims to provide children a healthy start at life. Stunting and impaired cognitive development are some of the irreversible consequences of poor nutrition during the first 1000 days (between a woman’s pregnancy and her child’s second birthday). According to their official website (http://scalingupnutrition.org/), SUN is a precondition in achieving goals of eradicating poverty and hunger, reducing child mortality, improving maternal health and combatting disease – which all contribute to build a stronger future for communities and nations. The third theme underlines the youth’s important role in improving health, through developing various innovations in nutrition promotion, agriculture, and food sciences. 

Formation of the iYouLead Forum

The training workshop led to the formation of the International Young Food and Nutrition Leadership (iYouLead) Forum. Members of the forum include the DoYouLead (Indonesian Young Food and Nutrition) alumni and the current training-workshop participants. The Forum will carry the objectives of the iYouLead Training Workshop and will manage the conduct of the next iYouLead.

The officers of the iYouLead Forum were also elected with the 2014 iYouLead Committee Head, Mr. Teguh Jati Prasetyo of Bogor Agricultural University as the iYouLead Forum Coordinator. The other five nominees constituted the forum’s executive committee and will hold posts related to general affairs, program development, human resources management, and marketing. Technical advisers of the iYouLead will come from partner institutions such as Pergizi Pangan and IUNS.

VYLH-Philippines on global participation

Both of the VYLH-Philippines delegates came from the network’s pioneer batch of volunteers. At present, Mr. Floyd Edrea is a registered nurse and Birth Defects Surveillance Project Nurse Coordinator in the Visayas Region. Edrea is also the current VYLH-Philippines Cluster Secretariat. Mr. Ryan Pascual is a graduate student at the Institute of Biology, University of the Philippines Diliman.  

In the network, both held important positions with Pascual as National President and Edrea as the Visayas Cluster Coordinator for two years, from 2011 to 2012. 

VYLH-Philippines is grateful for the support extended by the organizers of the First iYouLead Training Workshop and their adviser Prof. Hardinsyaw, VYLH-Philippines National Program Adviser Dr. Carmencita Padilla, and Dr. Christopher Howson of the March of Dimes.

________________

Editor Joan Barredo (NCR-South Luzon Cluster PIRO)

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Moving forward: Viral ALS challenge ignites Senate support to PHL Rare Disease Bill

Post by Volunteer Youth Leaders for Health - Philippines.

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Revised protocol on NBS blood spot collection

Health Promotion Update No. 2 - Series of 2014
Health Promotion and Advocacy Working Group

Adapted Article
DOH adjusts newborn screening protocol
Originally Published Philippine Star, 31 July 2014
Written by Shiela Crisostomo

 MANILA, Philippines - The Department of Health (DOH) has modified the protocol for the collection of blood samples for newborn screening (NBS) to effectively cover maple syrup urine disease (MSUD), one of the rare diseases afflicting Filipinos.

In Department Memorandum No. 2014-0200, DOH Undersecretary Janet Garin said at present NBS is “ideally done on the 48th to 72nd hour from birth.”

But to help ensure better prognosis for MSUD, the DOH decided to change the protocol in collecting blood samples from newborns for NBS.

Under the new policy, NBS “should be ideally done immediately after 24 hours from birth and the blood sample should be in the laboratory not later than four days.”

Introduced by the DOH in June 1996, NBS is aimed at the early identification of infants who are affected by certain “genetic/metabolic/infectious conditions.” This was designed to provide afflicted babies with timely intervention, thus reducing death and associated disabilities.

According to Garin, MSUD is an “autosomal recessive inborn error of metabolism caused by the deficiency or absence of the branched-chain ketoacid dehydrogenase enzyme.”

Those afflicted with MSUD may present with poor suck, lethargy, vomiting, irritability, seizures and coma. If left untreated, patients may have serious brain damage and possible mental retardation.

The high incidence of MSUD led to its inclusion in the list of conditions covered by NBS in 2012. But since its inclusion in the NBS Panel, high morbidity and mortality rates for the MSUD-positive screened patients were noted.

Upon review of the cases, Garin said the observation was attributed to the delay in the screening time and/or newborn screening turnaround time or the time from sample collection to testing and eventually to recall of patients for proper management.

“These patients need urgent diet modification as further delay will lead to irreversible complications. For patients recalled beyond five to seven days, urgent peritoneal dialysis may be required to save patients,” she added.

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VYLH-Philippines celebrates Fifth Founding Anniversary

Written by Aple Dowanie Tadlas

Published Newborn Screening 

July-August 2014 Issue

Anchored on the theme “VYLH High Five: Educate, Empower, Engage and Experience,” the anniversary celebration was set to encourage every VYLH member to be updated with the current trends of being a volunteer youth. Coincidentally, July was also VYLH’s Organizational Orientation Month, a time when all member organizations are requested to reorient their members about VYLH-Philippines. Orientation sessions were held during the anniversary week and all of July.

Activities during the one-week celebration were not confined to the grounds, social media activity was also launched. The VYLH anniversary celebration used the official hashtags #HighFiveVYLH and #VYLH5thAnniversary, which volunteers could use on Facebook and Twitter. Volunteers were also invited to participate in social media campaigns such as High Five! (July 14), VYLH Five-orites (July 15), and IVolunteer (July 16).

Related: #HighFive: A Primer to the VYLH-Philippines 5th Founding Anniversary Celebration

Traditional Pasasalamat. Through the aid of technology, VYLH-Philippines has annually conducted a Skype session in concurrence with a simultaneous nationwide dinner held at key locations in the country. Participanting core groups include NCR, Visayas and Mindanao. 

Street Fashion and Zumba 5inco. The streets of Davao City on July 12, 2014, were host to the Street Fashion Photo Shoot, the kick off activity of the 5th Founding Anniversary of the VYLH-Philippines in Mindanao. Organized by Mindanao young volunteers, the photo shoot showcased a collection of VYLH-Philippines apparel and other souvenir items given throughout the different conferences and congresses since 2009. The rest of the activities were slated on July 14-18.

Together with the Newborn Screening Center–Mindanao, the volunteer youth leaders spearheaded the highlight of the celebration, the Zumba 5inco for Health, a Zumba dance exercise open to all healthy lifestyle enthusiasts in Davao City. The event was held at People’s Park, Davao City, from 5:30 to 6:30 in the morning and was attended by 142 joggers, youth volunteers, and students from University of Southeastern Philippines and Mindanao University. A brief presentation about the VYLH network and its advocacies was also conducted before the program started. A free blood pressure checkup booth was also installed near the activity grounds. Free water and bananas were also given to the participants.

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#HIGHFIVE Talk: 5th Anniversary Message From Kuya Emman

Words from VYLH-Philippines National President, Christian Emmanuel Enriquez of VYLH-Philippines Cebu Chapter on the organization's 5th Anniversary.

Words will not be enough to express how far we have come. I am humbled, honored and will forever be 

grateful to be part of something so grand not because of its increasing size but because of the value, 

effort, love and commitment the members of this organization have continuously shown all throughout 

this journey. 

Five years of friendship, experience, challenges, work, fun and five years of building a family so strong 

that was able to withstand even the challenges of time and calamity (typhoon Yolanda). 

To the Pioneers "The Visionary" I salute you, for planting the seed of which the fruits are what we 

harvest today. Thank you for your continuous, unending and unselfish support to make sure that the 

organization can move and reach its goals. 

To my batch mates K4 "The Creative Mind" I admire you, for your creativity, talent and enthusiasm that 

allowed us to conceptualize and deliver activities that are considered best practices in the hopes of

strengthening our advocacies. 

To our successors I3 "The Silent Worker" I congratulate you, for taking on the challenge and 

continuously doing the leg work of inspiring people and transforming them to become learned 

individuals. 

And E4 "The Future" I thank you, for accepting the responsibility of upholding the principles and 

advocacy of the network. You are the hope of the organization. 

Our existence would not have been possible without the support of our partners, mentors, advisers, 

secretariat among others who I consider as the backbone of the organization. To our Community 

Based Organizations, School Based Affiliates my sincerest appreciation for allowing your representatives 

to take part of the network's growth and journey. 

Indeed you are all GIFTS. It is amazing how the Almighty has allowed us to meet each other and has blessed this unique family we can truly call our own. 

May we continue to find light and inspiration from and in each other. May we continue to share knowledge, 

creativity and passion. May we continue to strengthen the advocacies of the network and reach wider 

coverage of transformed and learned communities. Finally may we continue to become GIFTS to 

others. 

That is to Give, Invest in Friendship, Time and Spirituality. 

The VLYH journey continues. Happy Fifth Anniversary! 

Salamat ug Padayon, 

Christian Emmanuel "Kuya Emman" P. Enriquez RN, MAN
VYLH-Philippines National President

2012-present

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Anniversary Message from PSOD and Launch of the Online Petition for a Rare Disease Act of the Philippines

July 18, 2014

Dear Officers and Members of the Volunteer Youth Leaders for Health - Philippines, 

Greetings and congratulations on your 5th Founding Anniversary! 

In behalf of the Philippine Society for Orphan Disorders (PSOD), we convey our deepest gratitude for the nationwide support you have given us for the past five years in promoting our advocacy. 

Over the years, we have felt significant progress in growing awareness and support from the general public and private sectors for our member patient families. Much of this we sincerely attribute to the creative programs you have launched nationwide, most especially during the yearly celebration of the National Rare Disease Week and World Rare Disease Day. The voluntary participation of your members at PSOD’s activities is much appreciated. We are truly so blessed by your partnership.

We are ecstatic that you have initiated and have chosen to launch the online petition to call for the support of the enactment of the “Rare Disease Act of the Philippines” at Change.org on this special day, your Fifth Founding Anniversary. The journey to realize this into law will be long and very challenging. Your viral support will be very crucial. We truly believe that hand in hand, working together, this can be realized, and that someday, soon sustainable access to health support for persons afflicted with rare disease and their families will be possible. 

We wish you success in growing your organization and individual fulfillment in the laudable work you all do together. In behalf of our member patient families, the Board of Directors and staff of PSOD,….MARAMING, MARAMING SALAMAT.

Sincerely, 

(signed)
Cynthia K. Magdaraog
President

---

SIGN NOW. Visit the Online Petition for the Early Deliberation and Passage of a
"Rare Disease Act of the Philippines" within the 16th Congress

Since it's inception in 2009, VYLH-Philippines has been conducting activities designed to increase the public's awareness on the plight and fight of Filipino with orphan or rare disorders. These 

Persons (mostly children) afflicted with a rare genetic disease are "orphaned" by society. They suffer from social abandonment because of lack of existing network of support to aid them. Medical help is elusive under the conditions of the country's health priority. Because the nature of rare disease (otherwise known as orphan disorders) are long standing, life threatening, progressive and require multidisciplinary care, essential treatment and supportive care likewise require lifelong administration.

Persons born with and afflicted with rare or orphan disorders are a vulnerable and special population. Despite the small population, like any other Filipino citizen, they too have an equal right to life and and equal right to access health support.

The law will put in place a permanent and sustainable mechanism by which the State shall institutionalize a system that is comprehensive, integrative and sustainable, and will facilitate the collaboration of various stakeholders towards the provision of early and sustainable care of every person afflicted with rare or orphan disorders. 

SIGN NOW. Click this link to visit the Online Petition Site.

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VYLH-Philippines NCR conducts Mothers' Classes

Written by Christine Querubin

VYLH-NCR on the go! Volunteers conducting the Mother's Class, a regular session done to provide information to the mothers of Ward 15, PGH.

The Volunteer Youth Leaders for Health-Philippines NCR region conducts a regular Mother’s Class at Ward 15 (OB GYN), Philippine General Hospital every Saturdays, 9-10 o'clck in the morning.

The regular classes started on April 12, 2014 after the approval of Dr. Myka Martinez, OG GYN Chief Resident. VYLH-NCR members give short talks on Folic Acid Supplementation and Newborn Screening to mothers and their families who are in direct need of the organization’s advocacies. Brochures are also distributed to the patients and their relatives after each class.

The Mother’s Class is aimed to encourage the patients in the OB GYN ward to have their newborn babies screened. Talks on the organization’s advocacies are timely for mothers and families who may not be aware of the benefits of Newborn Screening and Folic Acid Supplementation as revealed by recently concluded classes.

The mothers classes also serve as a training ground for Batch E4 volunteers who are expected to conduct similar talks in their respective schools and communities.

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#HighFive: A Primer to the VYLH-Philippines 5th Founding Anniversary Celebration

Why do we celebrate July 18? 

It was on the night of July 18, 2009 when the pioneer batch of VYLs pledged their commitment to the network, and offer their voluntary service for the alleviation of health conditions, the alleviation of the public's awareness on the flagship advocacies of the network, and the mobilization of the Filipino youth for health.

On that night, VYLH-Philippines was born. 

Read more about the VYLH-Philippines story in our website.


Planned Activities #HighFive

National 

• Pasasalamat (The VYLH 2014 Skype-Dinner). A  simultaneous nationwide dinner held at key locations in the country. The Skype session will be held at 6:00 PM. 

• Organizational Orientation Month. All member organizations are requested to orient their members about VYLH-Philippines. Orientation sessions are suggested to be held during the Anniversary week and the succeeding days of July. Orientation materials (PowerPoint presentations and printed materials) are available by request.

Social Media (Week-long)

• Official Hashtags:  #HighFiveVYLH #VYLH5thAnniversary
• Tag our official social media accounts in Facebook and Twitter (@vylhphilippines)
  

• July 14 High Five! Prepare a fansign with “Happy High Five VYLH!” Invite 2 or more co-volunteers, friends, classmates, co-workers, neighbors, even strangers to have a groupie shot, holding your fansign. Make it as fun as you want it to be. Upload your photo on your Facebook Page, Twitter & Instagram accounts and include the official hashtags #HighFiveVYLH #VYLH5thAnniversary #VYLHFansignGroupie Don’t forget to tag the Volunteer Youth Leaders for Health Philippines Fan Page.

• July 15 VYLH Five-orites. What’s your favorite? Pick five (songs, music videos, news articles, photos) that remind you of your most memorable VYLH experiences. Share a short description for each pick. Post them on your fb wall and tag the Volunteer Youth Leaders for Health Philippines Fan Page. Use hashtags #HighFiveVYLH #VYLH5thAnniversary #VYLHFiveorites

• July 16 IVolunteer. Show some love! Upload a 5-10sec personal video sharing your biggest “why” in volunteering. Start your line with “I volunteer because __,” and end it with a greeting “Happy 5th Anniversary, VYLH!” Post your videos in social media sites using official hashtags #HighFiveVYLH #VYLH5thAnniversary #IVolunteerVYLH Also, tag the Volunteer Youth Leaders for Health Philippines Fan Page.

• July 17&18 Let’s go back to the beginning! Upload a photo(s) of your most memorable moment(s) throughout your VYLH journey. Post them in your fb wall, IG and Twitter and tag the Volunteer Youth Leaders for Health Philippines Fan Page. Don’t forget to use the anniversary hashtags #HighFiveVYLH #VYLH5thAnniversary #UltimateVYLHThrowbackThursday and #UltimateVYLHFlashbackFriday

Launch of the Online Petition for a Rare Disease Act of the Philippines

Since it's inception in 2009, VYLH-Philippines has been conducting activities designed to increase the public's awareness on the plight and fight of Filipino with orphan or rare disorders. These 

Persons (mostly children) afflicted with a rare genetic disease are "orphaned" by society. They suffer from social abandonment because of lack of existing network of support to aid them. Medical help is elusive under the conditions of the country's health priority. Because the nature of rare disease (otherwise known as orphan disorders) are long standing, life threatening, progressive and require multidisciplinary care, essential treatment and supportive care likewise require lifelong administration.

Persons born with and afflicted with rare or orphan disorders are a vulnerable and special population. Despite the small population, like any other Filipino citizen, they too have an equal right to life and and equal right to access health support.

The law will put in place a permanent and sustainable mechanism by which the State shall institutionalize a system that is comprehensive, integrative and sustainable, and will facilitate the collaboration of various stakeholders towards the provision of early and sustainable care of every person afflicted with rare or orphan disorders. 

SIGN NOW. Click this link to visit the Online Petition Site.

Activities for VYLH-Philippines members and member organization:

NCR-South Luzon

• VYLH-Philippines Orientation at De La Salle Lipa. About 150 students are expected to attend the said orientation. The activity was initiated by De La Salle-Lipa Biology Society which is one of the newly affiliated organizations of the network after their attendance to the VYLH-Philippines NCR- South Luzon Cluster Orientation held last May 3 (Rescheduled)
• Newborn Screening Center-NIH (NSC-NIH) Laboratory Tour
• Talk on Expanded Newborn Screening during the Anniversary Dinner celebration (Venue: TBA)

Visayas

• FlyFive. Symbolic release of balloons during the 5th Anniversary Celebration Pasasalamat Dinner.

Mindanao

• Zumba 5inco (Cinco for Wellness). A Zumba dance exercise event and invitational event for Zumba dance groups in Davao. Scheduled to be held at 5:30 in the morning, the dance exercise will be followed by a brief presentation of the network and its advocacies. A Free BP Check-up booth will also be set-up near the activity grounds. (Venue: TBA)
• Street Fashion/Passion Photoshoot of VYLH-Philippines Apparel. A collective of all VYLH-Philippines clothing and other souvenir items provided during conferences and congresses starting from 2009. 

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Catalyst of Change: Making our mark in History by Daniel Canlobo

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VYLH- Philippines supports Buntis Congress 2014

Written by Romulo Nieva, Jr.

NCR-South Luzon Cluster, Batch E4

Reduction of child mortality and improvement of maternal health are two of the health-related Millennium development Goals set by the United Nations and its member states. Despite the presence of this international framework, child and maternal mortality continues to be a pressing global phenomenon. This is especially true in the Philippines where several efforts have been mobilized to address such public health issue. One significant response is the Buntis Congress organized by ABS-CBN’s DZMM, in partnership with the Department of Health (DOH), National Nutrition Council, Midwives Foundation of the Philippines, POPCOM and Philhealth. This annual event, currently in its 12th year, aims to help nurture and enrich future moms with knowledge that they need for motherhood and child care.

The Volunteer Youth Leaders for Health-Philippines NCR-South Luzon Cluster joined the event last June 7, 2014 at the Megatrade Hall, SM Megamall, Metro Manila in coordination with Ms. Beth Dumaran, Coordinator for the Maternal, Neonatal and Child Health, and Nutrition (MCCHN) Unit of DOH, and Ms. Hermes Pascua, Newborn Screening Nurse Coordinator under the Center for Health and Development-NCR (DOH Regional Office). 

The event ran through a series of lectures on maternal health and nutrition and child care followed by a testimony by DZMM anchor Niña Corpuz about her personal experience as a mother. Talks on perinatal health were also provided by the DOH representative. Additionally, free pre-natal check-up and ultrasound were provided by the organizers to around 1000 pregnant women who attended the event. 

Members of VYLH-Philippines gave out NBS pens provided by Newborn Screening Center – NIH. Brochures on Folic Acid Supplementation and Newborn Screening were also distributed. Volunteers were also able to administer brief talks about the organization’s advocacies during distribution. 

Participants were able to take home baby bags and other freebies. Sponsors of the event also raffled away baby garments, pillow sets, baby supplies, and recreation showcases.

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DOH-NCR and DZMM partner for 12th Buntis Congress

Written by Ms. Hermes Echiverri-Pascua
Published Newborn Screening
July-August 2014

The Department of Health–National Capital Region Office (DOH-NCR) once again teamed up with DZMM for the 12th Buntis Congress at the SM Megamall Megatrade Hall, Mandaluyong City, on June 7, 2014.

Buntis Congress is an annual event that gathers pregnant women and where mothers and would-be mothers listen to lectures about their health and the health of their babies.This year, topics in the congress include family planning, breastfeeding, and essential intrapartum newborn care including newborn screening, complications of pregnancy, and nutrition during pregnancy, among others. 

Mothers were also treated to games, raffle prizes, performances of guest artists. DOH-NCR gave away newborn screening lunch bags to the raffle winners. 

Members of the Volunteer Youth Leaders for Health–Philippines NCR were also present during the Buntis Congress. The youth leaders took this opportunity to educate the attendees on newborn screening and folic acid supplementation by distributing informational materials and freebies. 

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Ms. Hermes Echiverri-Pascua is one of the Nurse Coordinators for NCR at the DOH-NCR Regional Office.
Photos Ms. Hermes Pascua and Rufus Thomas Adducul

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On Being A Volunteer: A Test of Passion

Written by Jane Alcomendras

University of San Carlos, Cebu (Alumna), Batch K4

I'm Jane G. Alcomendras, a registered nurse and a proud volunteer youth leader for health. Last 2010, it was my second year of serving the Student Body of the College of Nursing in the University of San Carlos-Talamban Campus. It was also my first year to be part of the Volunteer Youth Leaders for Health (VYLH)-Philippines. At that time, I was so pleased to be invited to attend the VYLH-Philippines Visayas Island-Wide Camp because out of the entire studentry of the University – I was one of the two who were given the opportunity to attend the said camp.

As a delegate, I was reluctant at first and I was not so into talking that much. Fortunately, my teammates were euphoric while the facilitators and advisers were jaunty and convivial. I really can’t help myself but to go with the tide. And from there, the organization brought me out from my shell and it had a lot to do with who and where I am today.

Experiences, Insights and Sacrifices

First, as a student leader who is vying to be one of the Top Outstanding Leaders in the University, it wouldn’t be possible for me to be nominated and make my walk up to the stage without having VYLH-Philippines as one of my extra-curricular activities/organizations.

Second, in my previous profession as Public Health Nurse, I can really say that I’ve been a very productive as a volunteer youth leader (VYL) and advocate of the VYLH-Philippines’s advocacies- NBS awareness, Folic Acid Supplementation campaign and support for rare disease patients. I believe my previous job provided an avenue for the advocacy since the community-based setting allowed me to deal with people from all walks of life.  I was also even requested to take part in the Local Health Board meeting together with the city officials and other department heads to speak about the importance of having newborn screening in our city hospital and BEMONC (Basic Emergency Obstetrics and Newborn Care) facility. Though being a public health nurse requires a lot of work to do (e.g. paper works, reporting, etc.) and I’m an hour and a half away from Cebu City, I really manage my time to attend or get involve with the activities locally organized by the network and its partners such as the Reunion of Saved Babies, Family Forum for Children with Rare Disorders and the like, because I care and I love the things I that do. I even let my peers and co-employees get involved with our advocacies. My experiences with VYLH-Philippines and with other organizations also became instrumental for me to get invitations to be a resource speaker with regard to health and safety. I also got invited to be a facilitator in a team building of one of the biggest company in Mandaue City. These made me believed that “experience is really a great teacher”.

So much with the achievements, let me say that being in this organization is so horrible- it made me cry twice. The first time was during the K4 camp when they announced that I can no longer continue being in the group because of the “what I did last night” incident while the second time was when I decided to stop from my work just to attend the Third National Congress last November 2013. So ironic isn’t it? 

But here’s the story behind those epic scenes. The first scene is a VYLH-Philippines’ tradition – it’s for you to know and for me to find out, while the second happened when I had my brief call center experience. Unfortunately, the company won’t allow me to take a leave because I’m still on the training phase. To end my dilemma, I decided to quit and join the Congress. It’s just a matter of choice and I chose to be with my VYLH-Philippines family. These are the reasons why it’s horrible being in this organization- horribly amazing, horribly exciting, and horribly worth keeping.

On staying and passing the torch

I can still remember during the Third National Congress when we had our games and sharing sessions, one fellow VYL asked me, “Jane, if VYLH would be the answer, what would be the question?” and without second thought, I was able to say “Bakit ako nandito?” (Why am I here?) . And yes, that was perfectly my very honest answer because of the experience I had before the congress. 

I don’t know why I got stuck with this organization- I don’t get paid. I just give IEC materials to people and promote our advocacies. There are times when I even spent money for my transportation whenever I go to the city to attend network’s events - but I just can’t resist it. I love the things I do in this organization. That’s why I am called a volunteer – I do things in my free will. I am doing things without coercion.

Now that I am one of the elders in the group, I am now passing the challenge to you guys- to be the salt and light for a healthier nation, and to keep the fire burning.

So, this is my story with VYLH-Philippines. What’s yours?

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Jane G. Alcomendras is a Registered Nurse and alumna of the University of San Carlos – Talamban Campus. She became a member of VYLH-Philippines after joining the Visayas Island-wide Camp which is one of the K4 Camps in 2010. At present, Jane is an Executive/Company Nurse at Mastercraft Philippines, Inc.

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VYLH-PHL spearheads youth leaders' orientation in Ilocos

Written by Roland Alcantara

Originally Published Newborn Screening 

May-June 2014 Issue

To empower the youth in advocating maternal and child health,the Volunteer Youth Leaders for Health (VYLH)–Philippines North Luzon Cluster in collaboration with the Department of Health-Regional Office (DOH-RO) Ilocos and Newborn Screening Center–Central Luzon, conducted a VYLH Orientation to 50 youth leaders at the Don Mariano Marcos Memorial State University College of Nursing and Midwifery in La Union, May 16.

Since 2009, VYLH Philippines has widened its network of proactive young leaders to promote infant health, particularly on issues concerning folic acid awareness, newborn screening promotion, and the plight of Filipinos with orphan disorders.The Network promotes its vision through promotional and educational activities in different local communities.

The VYLH Orientation was composed of a series of discussion centering on volunteerism and membership, child and maternal health campaigns, and action planning. Among the invited resource speakers were Roland Alcantara, Project Development Officer of Newborn Screening Center–Central Luzon; Mary Michelle Lewis, DOH-RO Ilocos Nurse Coordinator; Marie Kris Lacuata, DOH-RO Ilocos Nurse Coordinator; and Robin Albinto, VYLH Coordinator for Ilocos and Central Luzon.

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NCR-South welcomes Batch E4 Volunteers

Written by Christine Querubin
NCR-South Luzon Cluster

Fifty eight new members were added to the roster of volunteers in the VYLH-Philippines NCR-South Luzon cluster during the Volunteer Orientation on May 3, 2014 at the Lara Hall, UP Manila. Participants from Cavite, Batangas, Los Baños, Quezon City and Manila joined the whole day gathering featuring talks on volunteerism, newborn screening, folic acid supplementation, and rare diseases. 

Dr. April Berboso, NCR-South Luzon Cluster Adviser, gave a video message welcoming the new batch of members to the organization. This was followed by team building activities and games aimed to acquaint the new members with existing volunteers.

Mr. Jasper Jover, former VYLH-Philippines Mindanao Secretariat gave a lecture on volunteerism and Christine Querubin, NCR-South Cluster Coordinator oriented the participants about the organization and gave an overview of its core advocacies. Separate talks on Newborn Screening, Expanded Newborn Screening, and Folic Acid Supplementation were handled by Ms. Hermes Pascua, Newborn Screening Coordinator for the Center for Health and Development-NCR, and Ms. Marian Cuenca, VYLH- Philippines NCR-South Secretariat, respectively.

The Batch E4 members also worked on their action plans for the year by region, city and school. The organizational orientation and advocacy talks were held in the morning while action planning and commitment rituals were afternoon sessions. Photos and organizational videos over the years havealso been shared to the new members in between sessions.

IHG Genetic Nurse Ms.  Aster Lyn Sur, VYLH-Philippines National Secretariat, lead the symbolic pledge of commitment. Selected representatives from VYLH-Philippines NCR-South Batch E4 also shared their insights as the newest members of the organization during the closing ceremony.

Photo credit: Odellaine Mendoza (Pioneer)

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VYLH-Philippines Programs recognized as Outstanding Health Awareness Project

Written by Robin Charles O. Ramos

VYLH-Philippines Mindanao, K4

The Global Youth Service Day (GYSD) is an annual international gathering of young volunteers spearheaded by Youth Service America (YSA). The event is conducted every April and is celebrated in more than 135 countries. It is dedicated to children and the youth and is claimed to be the largest service event in the world, since its establishment in 1988. For four years now, the Voice of the Youth Network (VOTY) is the chosen campaign partner in the Philippines.

In celebration of this year’s GYSD, the VOTY Network launched its first ever youth-led award giving body― the VOTY Awards. The citation is created to recognize deserving young individuals and youth-led and youth-serving organizations in the country that provide positive social change and share the same passion in serving the Filipino youth.

The Volunteer Youth Leaders for Health-Philippines (VYLH-Philippines) is a recipient of one of the prestigious awards given during the VOTY Network Kabataan Night 4: The Youth Revolution. This is a trademark activity where over 300 youth and youth organizations showcased their talents through literary-musical variety shows and various performing arts. It was held on May 4, 2014 at Mabuhay Restop, Rizal Park, Manila City. The three health advocacies of VYLH-Philippines are applauded by the VOTY Network as one of the Outstanding Health Awareness Projects of the year.

VYLH-Philippines' Programs recognized as one of the
Outstanding Health Awareness Projects of the Year

VYLH-Philippines is a network of more than 100 youth organizations in universities and communities nationwide. The main goal of the organization is to create a network of youth leaders and youth organizations in schools and communities in the Philippines who will champion in increasing public awareness on existing health programs, and on the significance of healthy lifestyle at an early age. 

The Network engages in three flagship advocacies namely: increasing awareness among women in their reproductive age on the significance of folic acid supplementation in the prevention of birth defects; increasing public awareness in saving babies from mental retardation and death through newborn screening; and lobbying public support for the urgent passage of the Rare Disease Act - an act addressing the needs of patients with rare orphan disorders.

The recognition received by the VYLH-Philippines is an inspiration in fostering strong partnerships with other youth-led and youth-serving organizations, as well as, advancing its advocacy to train young leaders, empowering them for health and improving birth outcomes through advocacy. This achievement is also joined by the recently concluded youth leaders’ orientations in CAR, NCR, Southern Tagalog and Central Visayas. 

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Robin Charles Ramos is a Master in  Business Administration graduate of the Cor Jesu College  in Digos City, Davao del Sur. He is also an alumnus of  South Philippine  Adventist College where he completed his degree in Business Administration. Robin  became affiliated to the network during the 2010 Mindanao Island-wide Youth Camp.

Photo Credit: Romer Guerbo
Editor: Christine Queribin, Ryan Pascual

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VYLH-Philippines Central Visayas Camp 2014: Educating Future Health Warriors

Written by Pellan Rhey Capuyan

Foundation University, Negros Oriental, Batch E4

On May 10, 2014, around 10 o’clock in the morning, bright smiles and positive looks of the members of Volunteer Youth Leaders for Health - Philippines (VYLH-Philippines) welcomed my first day in the alluring Intosan Resort in Danao City, Cebu. Long hours of "self- improving" and "educating seminars" as well as the sets of activities for this camp were held in the said resort.

The introduction of officers, orientation of the goal of the organization, and lots of energizers formally commenced the first day. The seminar on the first day was from 1pm to 6pm. It taught us the importance of having newborn screening for every newborn, having enough folic acid supplementation for all especially women, and helping individuals with rare diseases. After which the participants were implicitly taught of camaraderie in a group dinner and the camp's team building activities. The agenda for the day ended at 11 pm through a solemn commitment ritual. The night was perfectly suited for the participants as they internalize the lessons learnt that day.

The cup wasn’t full yet for the craving minds and hearts of the future catalysts-of-change and youth leaders in communities! The second day featured the seminar on action plan development and the talk by the National Program Adviser, Dr. Carmencita Padilla. But of course, the camp was also not all about seminars. Fun spiced up the event too! Different leaders showcased their hidden talents. These were followed by the cultural presentations of leaders across the Central Visayan islands and provinces, such as Cebu, Negros Oriental, Siquijor and Bohol. The second day was concluded by giving sort of “Kalog Awards” to different leaders for individuality or uniqueness as observed by the facilitators during the two- day camp. This was followed by picture taking of course! Definitely, it was a day full of very memorable experiences.

The camp will always be a part of me. I will always look back to it, not the camp per se but the things that I learned and the people behind the continuous success of the organization. To name a few, they are Dr. Carmencita Padilla - National Adviser, VYLH-Philippines; Dr. J Edgar Winston Posecion - Unit Head, NSC- Visayas, VYLH Visayas Cluster Adviser; Dr. Barbra Charina Cavan - Visayas Cluster Adviser; Ms. Lyn Sur, RN - VYLH - Philippines. National Secretariat; and Mr. Emmanual Enriquez, RN - President of VYLH – Philippines.

To the senior volunteers who stayed active despite their hectic schedule, like Kuya Jp, Floyd, Steven, Lime, Ate Jane, Leah, Salima, Karen, Choko and the rest who also served as facilitators during the camp -- thank you! There are so many active volunteer youth leaders whose passion to serve humanitiy keeps on burning. Pardon me for those who were not mentioned. 

Similarly, I have been very grateful that I was able to join with the rest of the youth leaders because of the following who made it possible: my Clinical Instructor Ma'am Ivy Cornelia, Dean Nenita P. Tayko, administrators of Foundation University (FU), and the rest of the supportive individuals.

Indeed, the two-day camp taught me a lot of things. It gave me so much learning and realization. I can say that it renewed and made me more equipped with Skills, Knowledge and Attitude (SKA) of what a true leader should be. I will continue to be an effective leader and will keep the passion burning inside me until such time every individual will take a move in advocating for better health of Filipinos.

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Pellan Rhey Capuyan is a Senior Nursing student at Foundation University in Dumaguete City, Negros Oriental. He is also the current President of the Foundation Universities Association of Student Nurses. He is one of the newest VYLs added to VYLH-Philippines roster after the 2014 Central Visayas Camp.

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