Rare Disease Patient-Advocate to lead Benefit Screening for patients and PSOD
This November, a special block screening of “Frozen II”, the sequel of the 2013 blockbuster animated musical-fantasy film, will be held for the benefit of rare disease patients and the Philippine Society for Orphan Disorders (PSOD). Organized by Patient-Advocate Juan Benedicto “Dickoy” Magdaraog, the benefit screening will be held on November 24, 2019 (Sunday, 2:30 PM) at the Ayala Malls The 30th in Ortigas Center, Pasig.
Diagnosed with Pompe disease, a rare neuromuscular disorder, Magdaraog reached various milestones while battling with the disease for more than 30 years. He finished college with an Industrial Design degree and works on his start-up as a web developer. He also served as the voice of children with rare diseases in the country in various local and international speaking engagements, as well as on lobbying for the passage of the Philippine Rare Diseases Act.
This year’s benefit screening is not the first event to be organized by Magdaraog. On the occasion of his 40th birthday, Magdaraog together with his friends and family organized a block screening of the movie “Wonder” in 2017. Mr. Magadaraog compares the benefit screening initiative similar to Anna and Elsa’s quest in saving their kingdom. For him, it is a “quest to help save the lives of patients with rare diseases.”
More than one way to help
Aside from purchasing tickets for the special block screening, individual and corporate sponsorships are also possible. Everyone is also invited to share and promote the activity.
Mr. Magdaraog appeals to everyone to support this initiative and the cause of the Filipino rare disease community. “As a person who grew up with a rare disease, I know first-hand how difficult it can be. I’ve been lucky that I got the help and support I needed. I was able to get access to treatment that extended my life. I don’t want that bonus time to go to waste. I realized that the reason I’m here is to help fight for patients who can’t fight for themselves. Please help me fulfill that purpose.” Magdaraog wrote in a Facebook post.
About PSOD
The Philippine Society for Orphan Disorders is a non-stock, non-profit organization that was organized in 2006 to support the UP-NIH Institute of Human Genetics in achieving access to medical treatment and supportive care of patients with rare disorders.
With the help of its partners and IHG, PSOD endeavors to be the central network for the advocacy and effective coordination of all viable efforts to sustain a better equality of life for individuals with orphan or rare disorders in the Philippines.
PSOD programs include Patient and Family Welfare, Awareness and Advocacy, Resource Generation, and Program Development.#
For more information on tickets and sponsorship, contact Juan Magdaraog (juan@psod.org.ph) or Ms. Joy Escultero of PSOD ((02)661-8935 or +63 998 203 6831/ joy@psod.org.ph).