Listen to your heart!

I am writing this fundraising appeal on behalf of my courageous friend, Katusiime Christine. Christine has been the chairperson of the Rheumatic Heart Disease Patient Support Group at Uganda Heart Institute in Kampala, Uganda for 6 years. A heart disease patient herself, she has tirelessly advocated for patients throughout Uganda and around the world. She has spoken to international audiences about heart disease patients’ needs for services, support and recognition.

Christine is passionate to work at the local community level to educate and support patients who are fighting to access health resources, struggling to find a diagnosis, or preparing to travel to a foreign country for heart surgery. She recognizes the need to reach out to patients who have had heart surgery and face the difficult challenges of being on long-term anticoagulation medications (blood thinners). She knows that pregnancy presents special and largely unmet needs for young women wanting to start a family after heart surgery in rural Uganda. There is a need to fight the stigma of having a misunderstood medical condition in these areas and bringing those who have been lost to follow-up back into care.

Christine is a 2018 honoree of the prestigious Medtronic Bakken Invitation Award in recognition of the patient advocacy work she has done with the “extra life” afforded her through medical technology. She is now moving to expand her work to a larger audience in the underserved rural areas of Uganda with the Faayo Community Heart Health Initiative. Faayo is a local Ugandan word meaning care and concern for others. It describes Faayos’s care and concern for people in the community to have healthy and productive lives.

Christine and I have assembled a small core of founding members of three Ugandan patients who have had open-heart surgeries, and myself, an experienced health programme manager, to start this work. Ruth is a businesswoman, Sunday School teacher, and an active community member. Mpiima is an entrepreneur, musician, husband and father. Together, we have developed our mission and vision, and objectives statements, started the recruitment of our board, registered as a corporation with the Ugandan government and revenue service, and established a work plan for both the short and long term. We are proud of our values: Humility, Compassion for Others, Accountability and Integrity.

To accomplish our objectives, we are organising community activities and support groups that include basic health informational sessions, rheumatic heart disease (RHD) prevention messages, opportunities for patients to link with service organisations and fellow patients, and provide awareness raising to fight against the stigma and lack of accurate information about living with heart disease in rural Uganda. We will work with local schools, churches and community organisations to coordinate our events. Our targeted areas are Wakiso and Hoima Districts – areas where we have established relationships with community members and healthcare providers. As we grow, we intend to expand to other underserved rural areas.

We are looking to raise USD$6,000 for our remaining start-up costs that include launching a website, securing modest office equipment and accommodation, and hosting three community awareness-raising events in 2022. We are confident that with these funds, we can launch our activities and prove ourselves to local, regional and national government, business and non-profit funders to sustain us long into the future.

We are excited to have reached this stage of our project and have confidence we will succeed with hard work and determination. No donation is too small as we know that many small drops of water soon become an ocean. Please watch for our website in the coming months to stay up to date with our progress and successes!

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Susan Perkins
Murrieta, CA

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