When Valarie Malyneaux was diagnosed with vitiligo 20 years ago, her doctor told her there was no cure for this chronic immune disorder – and it turned her world “upside down”. As Valarie recounts in the latest Cures for the Commonwealth video, “saying those dreadful words: ‘there’s no cure, and there’s no support group,’ shook me to the core.”
Vitiligo has “been around for centuries, still somewhat unknown or unrecognized,” Valarie says, “where your pigment cells are dying – they are being attacked.”
But Valarie turned her despair into a commitment to helping others who suffer from this rare disease.
She started VITFriends – a vitiligo support organization – with a small group at a Dorchester bowling alley, which has since grown to16 affiliates across the country and around the world. She organizes a yearly conference where hundreds of people with vitiligo attend, support each other and take action. Valarie has become a vocal and passionate advocate on Beacon Hill and in Washington D.C. for increased support, research and funding for those impacted by this condition.
And today, thanks to patient advocates like her and the work of biotech researchers right here in Massachusetts, there are new treatments and new hope for those with vitiligo.
Thank you to Valarie for standing with, and standing up for, those living with vitiligo. And thank you to all the researchers, scientists, doctors, biotech employees and fellow advocates in Massachusetts and beyond who are working every single day to find life-changing cures, vaccines and therapies for rare diseases.
Valarie Malyneaux – From a diagnosis that shook her to the core, to a leader in patient advocacy.
