Patient Advocacy in the Spotlight: Vitiligo Support International
Vitiligo Support International (VSI) evolved from the frustrations of one person, Randy Salter. After developing vitiligo in 1994, he was told by doctors that there were no treatments and that he should just be glad that he didn’t have cancer. At the time, the internet was in its infancy which made it very difficult to find accurate and/or current information, and more importantly, to connect and share support with others.
As a result, in the year 2000, Randy founded VitiligoSupport.com, a grassroots website where those affected by vitiligo could interact in a safe environment free from solicitors. By 2004, with over 27,000 members, Randy decided to incorporate as a 501(c)(3) patient advocacy organization, and VSI was born. Because of her interest and experience in advocacy, Jackie Gardner was asked to join VSI’s Board of Directors, and in 2008, became the Executive Director.
Now headquartered in Lynchburg, Virginia, VSI has over 60,000 registered members from all over the world, and still offers a wide variety of forums serving the interests of young and old, as well as newly diagnosed, and old timers. However, VSI is no longer just a website or a support group. As a nonprofit organization, VSI continues its transition towards a national level of representation, with a greater emphasis on education, research and advocacy.
The organization is known for its quarterly e-newsletters covering medical updates, clinical trial recruitment, and featured article topics such as insurance coverage, OTCs, and bullying. They are also well known for their quick response time to e-mail and phone calls providing support services and accurate and medically-vetted information to a broad professional community.
According to Jackie Gardner, “VSI’s mission of “supporting those affected by vitiligo, raising awareness, promoting research, and discussing effective treatments until a cure is found,” could not be carried out without the shared commitment and unrelenting support of vitiligo stakeholders like Daavlin.”
VSI continues its commitment to providing compassionate patient support, and a steadfast agenda to eliminate barriers to research, education, and access to care, for all. For more information on joining VSI in its crusade to improve the future of vitiligo sufferers, please visit Vitiligo Support International.