Finding Hope in Darkness
The Hope for Lupus Foundation seeks to raise awareness about lupus so that the disease could be caught early on and proper treatment could be given so that no lives would be lost due to a lack of information and awareness about the condition.
Finding Strength in Togetherness
The foundation also provides much-needed support to those affected by the disease, from the patients themselves to their families.
WORLD WITHOUT LUPUS
The Hope for Lupus Foundation was born out of the need for information and awareness about lupus, and for an active and dynamic organization that provides support to people with lupus. There have been a lot of misconceptions and myths about Lupus and many people do not even know about this disease that afflicts about 5 million people worldwide. Because of the lack of information about lupus, even amongst people in the medical profession, many people with lupus remain undiagnosed, many people with lupus are given improper treatment, and many people with lupus die.
It was inspired by the personal experiences of Emmeline Aglipay-Villar, one of the founders of the Foundation. She had been experiencing many of the symptoms of the disease for years before she was diagnosed, but she was not given the proper treatment because she lacked awareness about the disease. When she was correctly diagnosed there had already been major organ damage to her kidneys. Upon being diagnosed with Lupus she has also been searching for an organization that would be able to provide support in order to cope with the disease, but she was not able to find any. She thought of setting up an organization so that no other person with lupus would die or suffer from major organ damage just because of a lack of awareness about the disease, and that every person with lupus would have an organization to turn to for support and guidance.
Emmeline Aglipay-Villar approached Melanie Cuevas and Lila Shahani, who also has lupus, and invited them to join her in fulfilling this mission. Rheumatologists, Dr. Paulo Lorenzo and Dr. Ging Zamora also volunteered to join the foundation. Sidney Salazar and Nadine Bernardino, other advocates for lupus awareness, also offered to help in the cause. Thus, the Hope for Lupus Foundation was incorporated in November 2016.
HFL started with less than 30 members, which consists of volunteers and lupus patients. Our primary communication group is called “Hope for Lupus Foundation (HFL) warriors group”, which is connected to more than 6,000 members nationwide consisting of 98% lupus patients (the rest are doctors, family members of the patients, and volunteers).
For the past years, we have launched several projects and events to promote awareness of lupus.
Seasonal Projects
EXHIBITS
1. Faces of Lupus
The launching of the Foundation was done by unveiling HFL’s first photo exhibit entitled Faces of Lupus. The event is in partnership with PGH Bridging Fund for Lupus and was held at the CCP Complex, Manila.
2. The Moving Butterfly Exhibit
Butterflies became one of the symbols of lupus along with the purple ribbon. The very reason behind this is that lupus patients develop a rash across their cheeks especially when they are in a “flare” (lupus is highly active). The rash mimics a butterfly shape hence, the symbol.
In partnership with SM and Ayala malls, HFL has launched an exhibit called the Moving Butterfly to spread awareness of lupus. The exhibit answers the general queries regarding lupus. It was displayed for a month in various SM and Ayala mall branches within Metro Manila.
3. Scarred but not Scared Photo Exhibit
In partnership with four multi-awarded photographers Jose Antonio Aliling, Bien Bautista, Josefino Mario De Guzman, and Maria Victoria Manotok-Arroyo, the Scarred but not Scared photo exhibit attempts to capture a glimpse of the lives of some of those who continue to courageously endure their lupus battles against lupus. The exhibit was displayed in Greenbelt Mall and Shangri-La Mall.
4. Tree of Hope
Last 2019, HFL commemorates Lupus Awareness Month by acknowledging the efforts, commitment, and selfless love of the caregivers to lupus patients. Lupus warriors expressed their heartfelt dedication to their loved ones as they hang their messages on the dedication tree— displaying their love to the public. The Tree of Hope is the first big project conceptualized, facilitated, and organized by volunteers, which was displayed at SM Mall of Asia. The event was in partnership with SM Supermalls.
5. Other exhibits
Other than the private sector, HFL also facilitates coordination between primary care providers and rheumatologists to ensure that people with lupus are diagnosed early and receive proper treatments. Hence, HFL also held exhibits in hospitals in partnership with Makati Medical Center and St. Luke’s Medical Center.
PUBLICATIONS
1. Living Better with Lupus
Other than the private sector, HFL also facilitates coordination between primary care providers and rheumatologists to ensure that people with lupus are diagnosed early and receive proper treatments. Hence, HFL also held exhibits in hospitals in partnership with Makati Medical Center and St. Luke’s Medical Center.
2. Lupus, Kayang-Kaya Ko ‘To
Hope for Lupus Foundation launched its second book entitled “Lupus, kayang-kaya ko ‘to!” at the Crowne Plaza Hotel. “Lupus, kayang-kaya ko ‘to!” is an info-graphic booklet that is written in conversational Filipino and contains concise and basic information about lupus. In partnership with the Department of Health the booklet “Lupus, Kayang-kaya Ko ‘to!” is going to be distributed for free in all health centers and government hospitals all over the Philippines. Sec. Duque expressed his intentions to create a Philhealth lupus package for indigent lupus patients and he gave his commitment to include certain lupus media like Belimumab and Hydroxychloroquine in the National Drug Formulary. This will be a big help to indigent lupus patients who cannot afford the medication for lupus.
FUNDRAISING ACTIVITIES:
1. Run for Hope
In 2018, a Fun Run was conducted to help spread awareness of Lupus. The event was made possible by our partners: CCIP (Chamber of Cosmetics Industry of the Philippines), Ever Bilena, SM Mall of Asia, and AyalaLand.
2. Art Auction for Hope
In 2021, Hope for Lupus has partnered with Gavel&Block by Salcedo Auctions to raise funds that will be used to support their projects and provide financial help to indigent patients who depend on the organization. With close to 100 lots, the online charity auction showcased works by leading contemporary Filipino visual artists like Emmanuel Garibay, Raffy Napay, Jigger Cruz, Alfredo Esquillo, Jr., Manuel Ocampo, Daniel dela Cruz, Winner Jumalon, and Olan Ventura.
ANNUAL PROJECTS
Monthly Meet-up
Aside from lupus, most patients (and even family members) also deal with anxiety, loss, and depression. Every month, Hope for Lupus reaches out to members to provide emotional support through its meet-up. Meet-ups are a safe space for patients to freely express their feelings and emotions to other lupus patients so that can get a better grip and understand the things that they are experiencing.
2. Training
Hope for Lupus Foundation provides seminars and training to its members to boost their mental, emotional, and physical well-being. The members are free to join activities such as Zumba, yoga, and a lot more!
3. Lectures
HFL conducts free lectures on lupus to local barangays and various groups.
Medical and Burial Assistance
The Hope for Lupus Foundation reaches out to its members who are confined in hospitals through its Medical Assistance program. The Medical Assistance program is a one-time donation worth PHP 2,500, which is given to patients who are admitted in a hospital. The Foundation also reaches the family members of lupus patients who have departed. The Burial Assistance is worth PHP 3,000.
Gift-giving
Every year, the Foundation celebrates its anniversary through a Christmas party wherein part of the program always includes gift-giving and raffle draws. Most of the prizes and tokens are donations from our generous friends and various partners.
These are just some of HFL‘s projects to show that the Foundation is dedicated to its vision of creating a world without lupus. HFL also collaborates with other initiatives that fund lupus research to improve treatments for lupus with the end goal of finding a cure for it.
