Rare Leader: Melody Burchett, President, A Cure In Sight
April 8, 2021
Name: Melody Burchett
Organization: A Cure In Sight
Social Media Links:
Disease focus: Ocular melanoma, also known as uveal melanoma, is a rare eye cancer that develops in the melanocytes of the eye’s choroid, iris, or ciliary body. While the initial tumor is nearly always treatable, about 50 percent of patients will develop fatal metastases. Currently, there is no cure for metastatic ocular melanoma. However, promising evidence exists that early detection, genetic analysis, targeted treatment, and integrative therapy may guarantee better results.
Headquarters: Raleigh, North Carolina
How did you become involved in rare disease: I was diagnosed with ocular melanoma and found patient information and assistance hard to find.
Previous career: Designer
Education: Attended some college
Organization’s mandate: A Cure in Sight (ACIS) supports families who have ocular melanoma and focuses on research for a cure. Through public and private partnerships, we provide clear and reliable educational information and provide a support community to patients and their caregivers. ACIS educates the public about ocular melanoma, treatment options, and clinical trials that may improve their prognosis, making it less overwhelming. ACIS is dedicated to ongoing research. We know we can accelerate viable research projects that otherwise would stall and not be completed, missing opportunities to advance research for effective treatments and possibly a cure.
Organization’s strategy: Do something different that better serves the community.
Funding strategy: Corporate collaborations and public donations
What’s changing at your organization in the next year: Hiring our first employee and transitioning from an all-volunteer staff
Management Style: Democratic management
Management philosophy: Everyone’s input is valuable.
Guiding principles for running an effective organization: Patients first, ethics above all.
Best way to keep your organization relevant: Update programs for changing times and grow with technology.
Why people like working with you: I let them have ownership of their projects.
On the Job
What inspires you: People living beyond their diagnosis.
What makes you hopeful: Current research is moving quickly and hopefully it will bring a cure.
Hardest lesson learned: Not everyone is out for the organization’s best interest.
Toughest organization decision: To hire a paid employee.
Biggest missed opportunity: A merger with another non-profit.
Like best about the job: Helping newly diagnosed people find support.
Like least about the job: Having to turn down financial assistance due to funding.
Pet peeve: Not answering emails.
Favorite movie: Two Weeks Notice
Favorite music: Mix of all current hits
Favorite food: Mexican
Guilty pleasure: Ice cream
Favorite way to spend free time: At the beach
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