By Victoria Jackson
I’ve always thought of myself as a “goodwill ambassador for makeup” and empowering women through makeup has been one of my missions in life. My personal philosophy has always been “When you look better, you feel better. And when you feel better, you can change your life.” I often volunteer at women’s correctional facilities, hospitals and youth support venues to spread this message and to teach inner confidence through outer beauty. When women embrace self-confidence, they learn the key to success, and liking whom they see in the mirror is a powerful first step in that transformative process. I call this program “The Power of Mascara.” Building my eponymous cosmetics brand these past twenty years has enabled me to touch millions of women’s lives through the power of makeup. What I didn’t realize during all this time was that my experience in beauty was organically preparing me for the next phase of my life – “The Power of Medicine.”
Two and a half years ago my perfectly healthy teenage daughter was stricken, without notice, by a very rare and often misdiagnosed, life-and-death autoimmune disease called NMO (Neuromyelitis Optica). It shook me to my very core. Originally known as Devic’s disease, NMO is a disease of the central nervous system that usually affects the optic nerves and spinal cord, which can lead to blindness and/or paralysis. It took every ounce of my being to stand taller than this disease and to educate myself, to become fearless in the face of the unknown.
I didn’t have a background in science or medicine, but I knew the only way I could help my daughter was to become a “Mom on a Mission.” I started a foundation with my husband to provide resources for adults and children with NMO and to start a movement for other orphan diseases. In the U.S. an orphan disease is classified as one that affects fewer than 200,000 people. There are currently more than 7,000 such rare disorders. Our goal was to create a platform to give NMO and related orphan diseases a voice. Our mission became clear: To fund research in the search to understand the pathophysiology and biochemistry of NMO Spectrum Disease. We wanted to support and provide opportunities to develop programs for prevention, clinical treatments and an eventual cure for NMO.
What I didn’t realize when I started the foundation is that most doctors and researchers do not share information with each other…that needed to change for us to succeed. We needed to create a new blueprint for how information would be shared. We have established a registry of researchers and patients and have organized regular forums to share information that further the discussion. We have the Mayo Clinic talking to Stanford University. We have Johns Hopkins talking to UCSF. We have parents and patients talking to one another. We have developed a blood sample repository. And we have identified that NMO is often misdiagnosed as Multiple Sclerosis. Researchers now believe curing NMO may lead to cures for other autoimmune related conditions.
I am committed to continuing to develop new systems for researchers to share data, to give NMO families a voice and to find the answers that will lead to prevention, clinical treatment and a cure. As Moms, Dads and caregivers we possess something that can move mountains and cure disease. It is our unconditional love that propels us to work harder to understand more, to fight for a cure, to never stop…and to never give up hope.
Victoria Jackson is the mother of three and founder of The Guthy-Jackson Charitable Foundation.