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The Official Publication of Volunteer Youth Leaders for Health - Philippines

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    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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    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. 

    Related Articles

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    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 campaign also serves 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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    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. 



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    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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    Written byAple Dowanie Tadlas
    PublishedNewborn 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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    Health Promotion Update No. 2
    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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    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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    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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    Lyric video by VYLH-Philippines


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    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.


    ___________________
    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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    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.

    One of my friends was supposed to pursue genetics but she fell in love with a native of Nueva Vizcaya and this also changed her plans. That friend of mine is Marilyn Cervantes Padre, the mother of Sarah Mae, a first year resident in our department.

    On a bright sunny day in May 1987, I was summoned to the office of the Chair of the Department of Pediatrics where four senior professors (Amelia Fernandez, Luis Mabilangan, Carmelita Domingo, and the late Perla Santos Ocampo) were waiting for me. Since I was the youngest faculty member at that time, having just stepped down from chief residency, I was the target. They sweet-talked me to changing my field to Genetics and they wanted a decision in 48 hours. I asked for a month to think about it. I visited the house of Dr Tereret Briones, the geneticist who passed away. I looked at her collection of books and honestly, I was very unhappy. It was a very difficult time for me. I was upset and hurt. I was eventually convinced (maybe the correct word is coerced) by my mentors to change my course from neonatology to genetics. Although a very difficult decision, to pursue a road less travelled, I said 'yes'. I come from a generation when the young MUST follow the old. That was 28 years ago.


    The College of Medicine had a ready scholarship for me for a fellowship in Clinical Genetics at the Royal Alexandra Hospital for Children, Sydney, Australia. Upon my return, I had the solo responsibility of setting up genetic clinical services and various genetic laboratories at the Philippine General Hospital that eventually moved to the National Institutes of Health. I first set up the Cytogenetics Laboratory in 1990. Then I set up the first newborn screening laboratory in 1997 in Manila, a Biochemical Genetics laboratory in 1999, and a Molecular Genetics laboratory in 2000. I then set up a series of newborn screening laboratories in the country because of the expansion of the newborn screening program – in Iloilo in 2005 to service the Visayas, in Davao in 2010 to service Mindanao, in Angeles City in 2011 to serve Northern Luzon, and recently in Batangas to serve Southern Luzon.

    Regrets? I have none. I am happy I made that difficult decision in May 1987. It was a major turning point in my life.

    If I pursued the path of a neonatologist, I will be working in 3 or 4 hospitals only. Because I made the difficult decision of becoming a geneticist, I have been able to set up all of these services and laboratories to serve patients from all over the country.

    Here are my first 2 lessons.

    Lesson No 1
    Dream. You must dream. It is free.

    Not all of our dreams will come true but it is an excellent exercise to aim for something. Life cannot be free willing. Just like any relationship, you have to invest time to even think of what you want to do in life. When you leave the halls of the Philippine General Hospital, you must have a plan and you have to work to achieve your plan.

    Lesson No. 2
    Life is made up of choices.

    In every turning point in my life and your life, we have a choice.
    The best choice is not always the easiest.
    The right choice is not necessarily what you want.
    Sometimes the choice is not what we want but somehow, there is a tiny voice in our heart that tells us that this is the right one.

    Let me move on to my second story. 
    How did I get involved with newborn screening?

    Because of my special training in Genetics, I became instrumental in setting up the newborn screening pilot project in 24 hospitals in 1996. Of the many challenges in my career, this probably will be tagged as the most significant since data generated from our research was the basis for Republic Act 9288 or the Newborn Screening Act of 2004. It is now being offered in 5800+ hospitals and lying-ins with more than 90,000 babies saved from mental retardation and death. It continues to save babies every day.

    Sounds simple but this journey taught me a lot of lessons. Allow me to share some with you.

    Newborn screening was being offered in developed countries since 1960s – way before most of you were born. Starting a new program in a country beset with many problems was a challenge.

    I remember visiting the Department of Health (DOH) in 1992 - soon after I arrived from my training in Genetics. Upon the advice of the College of Medicine Dean Alfredo Ramirez, I met with DOH Assistant Secretary Alex de Leon, who happened to be my professor at the UP College of Medicine. I introduced the concept of newborn screening. He was very accommodating but at the end, he said: no data, no policy. And he said, newborn screening will be competing with existing programs of the country. Of course I went home disappointed. It was clear that I need another entry point.

    Four years later in 1996, together with my mentor Dr Carmelita Domingo, we started a pilot project to generate data for the country. This story really started in November 1995 when Dr Domingo was worried because she was invited to give a talk on newborn screening and she had nothing to present. She shared with me that for the past 17 years since her return from her training in the US, she has been trying to convince funding agencies and the DOH to work on a pilot project in newborn screening but she was not successful. This time, we decided to work on this pilot together by inviting all 75 hospitals in Metro Manila. Only 28 responded to our letter and eventually only 24 hospitals joined the pilot project. Guidelines for the project were strict to give power to the data upon the advice of our epidemiologist, our Residency Training Program head Inday Dans. I still remember my meetings then with the hospital coordinators coming from the generation of Dr Domingo – at least 20 years older than me – and I was the youngest.

    We had good data after 2 years and we gave it the Department of Health. Unfortunately although declared as good data, the DOH was not ready to take on the project. So the coordinators from the 24 hospitals decided to expand the program to other hospitals on their own. By 2003, newborn screening was in 323 hospitals but the DOH was still not ready to take it on as a national program.

    When the newborn screening program was having difficulty in integration in the public health delivery system, I made the bold move of enrolling in a Master of Arts in Health Policy Studies at the College of Public Health, UP Manila. I considered this a step toward gaining the skills to write policies on newborn screening.

    When I finally prepared the draft bill on newborn screening, I gave it to Senator Juan Flavier who was my lead supporter. I had to deal with legislators and their staff who were predominantly male. I personally lobbied at both Senate and Congress and never in my whole lobbying stint did I have to bribe anybody. It is possible. I patiently waited in their offices or outside the plenary halls that you see on television.

    Being a student in 2003, lobbying for a bill was an experience.
    Being a woman probably became my strength at the end.
    Considered as one of the fastest bills to be passed, it was God after all who said, it is time!

    I thought that with the law, I will be free from the program but I am still very much part of the national program as a technical partner. There are many caveats in this 18 year history of newborn screening. I do want to share some insights with the graduates.

    Lesson No 3
    You must have a high threshold for frustration.

    Do not let frustrations get you down. For the past 18 years of the newborn screening program, I have a litany of disappointments and challenges that I can discuss in another session. The important thing is that you must learn to get up and move on. If I stopped in 1992 when I first met DOH Assistant Secretary Alex de Leon, then we will not have the national program today.
    In 2003, just before I gave the bill to Senator Juan Flavier, then DOH Secretary Manolet Dayrit asked me why I needed a law. I said, it was a challenge convincing the DOH secretary everytime there is a change of administration.

    Whatever your advocacy will be in the future, expect a lot of challenges. That is part of life.

    Lesson No 4
    The cliché ‘no man is an island’ is true for all generations.

    Most of you will move on to management or leadership positions.
    I may be the face for newborn screening but how to get 5800 hospitals to follow was a challenge.
    Legislation was one strategy.
    But getting it where it is right now needs a lot of good will. The people implementing the program must believe it is a good program. It cannot be lip service.

    Lesson No 5
    Leadership is a critical element of a successful program or advocacy. You will need this for your own advocacy.

    The newborn screening program has a team of leaders. Each one of the 5800 hospitals implementing the program has a coordinator. He or she must implement the program in his or her hospital. Doctors, nurses and midwives must follow them. I need a team of leaders to implement a national program.

    Can you be a leader? The answer is yes.
    You can also be a leader.
    I was not a leader in elementary or high school.
    It was in College when I started holding key positions in student organizations. By the time I was a medical student, I was always a class officer. Then I became Treasurer of the Medical Student Council and I was in charge of managing the MSU canteen. By residency training in pediatrics, I emerged as a promising leader. I eventually become a chief resident.

    At present, I hold several key positions. I am your Chancellor. I am still the Executive Director of the Philippine Genome Center, an office that cuts across all campuses of the University of the Philippines – UP Manila, UP Diliman, UP Los Banos, UP Mindanao. I still hold a Director position at the Commission on Higher Education until the end of December 2014.

    I was chosen to lead. So what makes a good leader?

    A leader is creative. A leader thinks outside the box……a thinker of new solutions for old problems.
    Consistency in excellence is critical. You cannot be a performer today and be a lazy person next month.

    It does not matter if your task is minor, do good at all times. Unfortunately, management will remember your failure…… your weakness. It is sad but that is reality. You have to project the image that you are responsible to take on a bigger role in the hierarchy of your organization.

    Everybody starts at the bottom of the ladder.
    Always put your best foot forward.
    Nothing really comes on a silver platter.

    Let me move on to my last story – the Birth Defects Surveillance Project.

    The Birth Defects Surveillance Project is another favorite of mine. I worked on birth defects way before I worked on newborn screening. But it has not reached the same level of success. After several attempts to take this off the ground, I managed to do a pilot project just like the newborn screening program but really, not enough to push policy.

    Lesson No 6
    Believe in other people.

    Last March, I was in Negros Occidental to deliver a message at the launch of the province - wide pilot on the Birth Defects Surveillance Project. The governor, mayors, municipal health officers, chiefs of hospitals, representatives from both private and government hospitals were in attendance.

    Their task is to conduct the pilot project, generate the data and hopefully, their data will be the basis of future policies on the care of patients with birth defects. Governor Alfredo Maranon asked – why Negros Occidental?

    My answer was very simple. I said, I believe in your people – they are passionate, dedicated, committed, outside the box thinkers, responsible. I just know that Negros Occidental is the right place. Negros Occidental is home to 11 exemplary awardees and 13 outstanding awardees in newborn screening. The leadership created new ordinances to ensure newborns in Negro Occidental are given the opportunity to live a normal life. They had to come up with creative strategies to capture as many babies in their province.

    At the presidential table, Governor Maranon asked me – what else can I do? I asked him ‘do you have money for scholarships?’ He said yes. He said, how many? I said four. I saw his face grimace – I said 2 this year and 2 next year. Choose your pool of candidate students and we will choose the best. These 4 students will help move forward this project.
    The next comment was very interesting. I want students who have a heart, the heart to help Negros.

    Passion is important. The people around you will know if you are passionate about your work, your patient, or your advocacy. It will naturally show.

    Allow me to finish my talk with a couple of lessons that cut across all of my projects.

    Lesson No 7
    Service to humanity is noble.
    When I was interviewed for the UP College of Medicine, I was asked. Why be a doctor? I did say ‘I wanted to serve humanity’. Honestly, at that time, it was just an answer to an interview question.
    Ask yourselves, why did you choose medicine? Why pediatrics? Why adolescent medicine?
    Why endocrinology? Why cardiology?
    Where will you serve? Who will you serve? Why and how?
    There are no right or wrong answers. These are personal questions.
    Ask yourself and reflect on your answers.

    Lesson No 8
    Time management is essential.

    Despite technology, the day is never enough for the many things you have to do.

    Lesson No 9
    Enjoy life. Enjoy time with family.

    I believe in balance in life.
    In one magazine interview I was asked “What do you do to unwind given your very busy schedule”. I spend the very little time that I have with family. We just go to the mall, or the gym, watch a movie or simply stay at home. On Sundays, I still do the marketing and I cook lunch. My son and I love to see new places and experience new things together. I have done a lot of crazy things with Patrick and the craziest so far is jumping off a 35 foot bridge to go rafting. In a workshop in Cagayan de Oro one summer 10 years ago, Patrick and my staff asked me if it was alright to get wet – just a little, they said. I said yes. While I was meeting DOH officials, they went home to change to their swimming attire. After my meeting, they made me change too. We soon got off the jeepney. We were given life vests and we were soon standing at the edge of the bridge. After the crisp instructions from the tour guide, the young ones jumped. They loved it. I froze. I stood there holding on to my life vest. I asked the guide if I was the oldest to do this crazy thing. The guide said many tourists much older than me have done this and the youngest was a 6 year old. After 20 minutes, I jumped. The whole experience was just a few seconds. This is definitely in contrast to my concept of rafting as simply sitting in this big raft and floating in the river. At the end of the rafting experience, Patrick asked if it was ok to do caving since we had a half day to kill the following day before going to the airport. I said yes. What could be so stressful about visiting a cave. What they did not tell me is that to enter the cave, we had to rappel 120 feet down the side of the mountain. Inside the cave was pitch black and we had to wade through bodies of water from one cave to another until the exit of the cave.
    Everyone should try adventures… stressful on that day but definitely lots of memories to remember.

    Lesson No 10
    Prayer is weapon.

    In the many trials in my life, prayer has been my companion. I believe that God always
    answers our prayers.
    Sometimes, He readily says ‘yes’ because it is our destiny.
    Sometimes, He gives something slightly different.
    And sometimes, He says ‘no’ because He has something better for us.
    In God's plan, there is a purpose for every person in this world. Men can help shape the future but only plans that are shaped with the guidance of God will reach perfection.

    So my dear graduates, here are 10 life lessons to start with:

    Lesson No 1 - Dream. You must dream. It is free.
    Lesson No 2 - Life is made up of choices. In every turning point in your life, we have a choice.
    Lesson No 3 - Have a high tolerance for frustration.
    Lesson No 4 - No man is an island.
    Lesson No 5 - Leadership is a critical element of a successful program or advocacy.
    Lesson No 6 - Believe in other people.
    Lesson No 7 - Service to humanity is noble.
    Lesson No 8 - Time management is essential.
    Lesson No 9 - Enjoy life.
    Lesson No 10 - Prayer is a companion.

    In God's plan, there is a purpose for every person in this world.
    Life is a journey. Life is an adventure.

    My dear graduates, look for your adventure.
    Life is good to live.

    Congratulations!
    ---

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    Starting this year, expanded newborn screening will be offered by newborn screening facilities nationwide. A tweet from the Newborn Screening Center (@newbornscreenph) prompted soon-to-be-parents to ask their doctors about the expanded program.

    Before the end of 2013, the expanded panel gained the approval of the Department of Health Advisory Committee on Newborn Screening (ACNBS-DOH). Data of Filipino newborns screened in the California newborn screening program from 2005 to 2011 have prompted the formal recommendation of expanded newborn screening program in the Philippines to the ACNBS.

    Included in the panel are hemoglobinopathies and additional metabolic disorders such as organic acid, fatty acid oxidation and amino acid disorders. All these conditions can be treated at birth, avoiding complications of no treatment. 




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    Last year, VYLH-Philippines started a series of regional orientation events which catered youth leaders from CAR, NCR, CALABARZON and Central Visayas. 

    The 2014 Central Visayas camp was held at Intosan Resort in Danao City. This year, with the support of DOH Central Visayas Regional Office and Newborn Screening Center Visayas, VYLH-Philippines will be holding the second youth camp for the region. 

    CALL FOR YOUTH LEADERS. The following are the qualifications and mechanics for application as camp participant. The application form can also be downloaded in this page. 



    DOWNLOAD 


    For a preview of last year's event, here are some of the blog articles written by our camp participants;

    Pellan Rhey Capuyan, Foundation University 

    Melorens Dumas, University of Cebu
    Gilbert Domingo, Silliman University

    We have also opened a public Facebook group where you can post questions and interact with VYLH-Philippines volunteers and your fellow applicants.  

    We look forward to knowing and welcoming more youth leaders in Central Visayas. 




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    Infographic on healthy choices for expectant mothers from the March of Dimes.


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    Photo: POGS-Southern Mindanao Chapter




    Held in separate locations, VYLH-Philippines joined the Philippine Obstetrical and Gynecological Society (POGS) in celebrating the 12th Buntis Day across the country. The network considers "Buntis Day" as an ideal avenue in promoting the network's advocacies since it gathers hundreds of pregnant women. During the event, VYLH-Philippines volunteers were given the opportunity to give some freebies and informational materials on the importance of folic acid supplementation and newborn screening  to the participants.

    As mandated by Presidential Proclamation 569, the National Day for Pregnant Women aims to promote the needs of pregnant women in order to have a healthier pregnancy. This objective is also reflected to this year's theme, "Kadakilaan at Malasakit ng Ina: Tulay sa Magandang Kinabukasan". The annual event also aims to recognize all pregnant women who are considered heroes in their own right as they bring and nurture another life into the world.

    This year marks the fourth year of VYLH-Philippines' participation to the Buntis Day. The network first participated in this annual celebration in 2012 which coincided with the successful attempt of the Philippines, led by POGS to obtain the Guinness World Record on the Largest Prenatal Class held in multiple locations.

    Davao City (POGS Southern Mindanao Chapter)
    March 8, 2015

    Cebu City (POGS Cebu Chapter)
    March 10, 2015

    Iloilo City (POGS Panay Chapter) 
    March 10, 2015

    Manila (POGS BAYCOG/Bayside Council in Obstetrics and Gynecology)
    March 10, 2015

    Lipa City, Batangas (POGS Southern Tagalog)
    March 10, 2015

    Los Banos, Laguna (Municipal Government of Los Banos/POGS Southern Tagalog)
    March 11, 2015

    Acknowledgements:

    • POGS Chapters and our contact persons: Dr. Amelita Jover (BAYCOG), Dr. Fritzie Tenorio (Lipa/POGS-STC); Dr. Luz Cambonga (POGS-Cebu); (POGS-SMC); (POGS-Panay)
    • Newborn Screening Center Visayas 
    • Newborn Screening Center Mindanao
    • Municipal Health Office of Los Banos, Laguna 
    • VYLH-Philippines volunteers and Secretariat: Katrina Gurro, Robin Charles Ramos, Aple Dowanie Tadlas (Davao); Emil Martin Pelias (Cebu); Floyd Edrea, Anna Leah Millares (Iloilo), Elaine Dimayuga (Lipa City, Batangas), Rufus Adducul, Maris Cura, Mark Tulisana, Marian Teresa Cuenca (Manila); Kraniel Papera, Jerome Florendo (Los Banos, Laguna)

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    • 06/12/15--14:55: IN FOCUS: Phenylketonuria
    • Health Promotion Update

      The following is a 2010 Interview of Dr. Carmencita Padilla. She is the current chancellor of UP Manilaand VYLH-Philippines National Program Adviser. One of the rare genetic disorders discussed in this episode was Phenulketonuria (PKU).

      (Salamat Dok, Hosted by Ms. Bernadette Sembrano-Aguinaldo, ABS-CBN Broadcasting Corporation)


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      REPOST
      DOST S&T Media Service

      Foods and ingredients fortified with folic acid such as rice and flour will easily find their way in stores and supermarket shelves once legislation is in place. This will provide more Filipina consumers with more amounts of a nutrient proven to help prevent the incidence of neural tube defects (NTDs) in their future children.

      At a recent Roundtable Discussion on Folic Acid organized by the Department of Science and Technology-National Academy of Science and Technology (DOST-NAST), Food Fortification Initiative’s Executive Officer for Asia Dr. Karen Codling stressed the necessity of mandatory legislation to create an impact on public health.

      “Eighty-one countries currently have mandatory legislation for the fortification of wheat flour,” Codling revealed. “All but five of these require fortification with folic acid. The Philippines is one of the five countries with mandatory fortification of wheat flour that does not include folic acid.”  

      In the same discussion, NAST Academician and UP Manila Chancellor Carmencita D. Padilla shared that the Institute of Human Genetics of the National Institutes of Health is proposing a legislation to establish a comprehensive policy on achieving adequate folic acid intake via food fortification and supplementation. This proposed bill, said Padilla, will hopefully be submitted to the Senate and the House of Representatives by August 2015.

      “We want to ensure that there is adequate supply of folic acid fortified food and food products and folic acid tablets at an affordable price,” Padilla stated.


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