Building A World Without Lupus

About Hope For Lupus Foundation

 

Lupus affects over 5 million people in the world, and yet so little is known about the condition that it continues to baffle medical professionals until today. This lack of awareness leads to countless misdiagnoses and deaths – deaths that could have been prevented had more people been armed with the right information.


Hope for Lupus Foundation seeks to change all that. It envisions a world without lupus and aims to shed light on the disease to help people win the fight against lupus.


Finding Hope in Darkness

Hope for Lupus is a non-profit organization that aims to promote the early detection and proper treatment of lupus by increasing awareness about this mysterious 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.


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 because there was a lack of awareness about the disease, she was not given the proper treatment. 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 not another 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 have lupus, and invited them to join her in fulfilling this mission. Rheumatologists, Dr. Paulo Lorenzo and Dr. Ging Zamora Racaza 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.

Know more about the founders of the organization:

Emmeline Aglipay-Villar

Emmeline Aglipay-Villar or Em graduated Magna Cum Laude in 2002 with a degree in A.B. Economics from De La Salle University and proceeded with a Bachelor of Laws degree from the University of the Philippines where she was a member of the Order of the Purple Feather Honor Society. Currently, she is the representative of DIWA Party-list at the House of Representatives.

Melanie Cuevas

Melanie Cuevas graduated at the Ateneo de Manila University with degrees in Business Management and Finance, and pursued her Master’s Degree in Business Administration at the Ateneo Graduate School of Business.

Lila Shahani

Lila is the current Secretary General of Philippine National Commission to UNESCO.

Dr. Paulo Lorenzo

Dr Paulo Lorenzo is a rheumatologist who has been in private practice since 1997. He obtained his medical degree and residency training in internal medicine from the University of the Philippines.

Dr. Ging Zamora Racaza

Dr. Geraldine Zamora-Racaza, or Doc Ging, graduated class valedictorian of her UP College of Medicine class and proceeded with Internal Medicine and Rheumatology training at the Philippine General Hospital.

HFL started with 47 volunteers. Currently, it has over 500 volunteers and 98% of the volunteers are lupus patients

First photo: First general assembly: January 24, 2017. Second photo: Lupus Club 25th Anniversary


 

1. Increase awareness about Lupus.

Activities: Lupus stories; infomercials; social media campaigns; Run for Lupus (Jan. 2018); HFL logo on Blackwater jerseys;  “Living with Lupus” book; PBA Governor’s Cup Blackwater Team Campaign, Exhibit Boards

 

2. Conduct information campaigns for early diagnosis and proper treatment of lupus

Activities: Lectures and Seminars to different local groups and organizations.

 

3. Provide support, care, and empowerment of people with lupus and their families

Activities/Programs: Monthly HFL support group meetup, zumba, anniversary parties, medical-financial assistance to lupus patients in partnership with DOH.

4. Facilitate coordination between primary care providers and rheumatologists to ensure that people with lupus are diagnosed early and receive proper treatments.

Activities/Programs: Monthly HFL support group meetup, zumba, anniversary parties, medical-financial assistance to lupus patients in partnership with DOH.

5. Collaborate with other initiatives that fund lupus research to improve treatments for lupus with the end goal of finding a cure for it.

Activity:  Seminars on Lupus for Barangay Health workers, family doctors and doctors to the Barrios–in cooperation with DOH

 

 

 

Check “Contact Us” page and be part of us!