In March 2016, the Vitiligo Working Group launched the “Step Up For Vitiligo” campaign, a movement created to build vitiligo awareness and support – and it’s time for you to step up too. Named to reflect the need for action in the vitiligo community, the campaign encourages people to “step up” for vitiligo – as advocates, awareness raisers, ambassadors and supporters.
So how can you step up for vitiligo? Here are ten ways to get started:
Smile when people stare and offer to tell them about vitiligo
It’s simple and effective – when you see someone looking at your skin, smile and ask if you can tell them about vitiligo. It takes some courage, but it goes a long way to building awareness about vitiligo when everyone in the vitiligo community steps up. Each and every interaction you have with someone who hasn’t seen vitiligo before leaves a lasting impression – and has the opportunity to gain another friend and supporter of the vitiligo community.
Share the “Vitiligo: Truth, Hope and Change” YouTube video with your network
At the center of the Step Up for Vitiligo campaign is the award-winning video “Vitiligo: Truth, Hope and Change.” Featuring powerful stories from vitiligo doctors and patients, the video explains the state of vitiligo today – who has it, what it is and how to treat it, and how emotionally and psychologically devastating it can be. If you’ve ever struggled to help your friends and family understand what you’re going through, this video will do it for you – and raise awareness at the same time.
Spread awareness on social media with #StepUp4Vitiligo
Sharing a picture on social media? Add the hashtag #StepUp4Vitiligo to support the campaign, increase awareness and help others in vitiligo community connect with you. It’s an easy way of educating others about your condition when they see the hashtag. Bonus points if you add other leading hashtags like #Vitiligo, #VitiligoNation and #TeamVitiligo.
Join or start a local support vitiligo group
Vitiligo support groups are local communities of those with vitiligo who meet throughout the year as a support and educational network. For example, the New York Vitiligo Community meetings include updates from dermatologists, time for introductions, and guest speakers who talk about anything from mental health to journaling and makeup. You can find existing support groups at http://www.vitiligoworkinggroup.com/support-groups.
Donate to the cause through various vitiligo non-profits and research organizations
Every day, there are hundreds of doctors, researchers, lobbyists and patients at work for the vitiligo community – and they need your help. Whether you donate to a nonprofit that provides support group networks, a research lab working to find a cure, or a global support group that advocates on behalf of those with vitiligo, your donation will go a long way to helping the vitiligo community. To see some of the organizations that take donations, visit our recent Holiday Guide to Giving.
Sign the petition at WWW.25JUNE.ORG asking the United Nations to officially recognize June 25 as World Vitiligo Day
The vitiligo community celebrates World Vitiligo Day on June 25, but it has yet to be officially recognized as a global day by the United Nations. The vitiligo community is trying to change that. A letter to the UN Secretary-General on www.25june.org asks the UN to both designate June 25 as World Vitiligo Day and to provide support for vitiligo healthcare and education. With over 500,000 signatures, the petition has is well on its way, but needs your help. Sign the petition today and ask your friends and family to sign too.
Write your local government officials to raise awareness in your own community
We need elected officials at every level – city hall, school board, governors, state legislators, senators and the president – to be aware of what vitiligo is; to understand that we need more money for research; to influence insurance companies to see it as a disease instead of a cosmetic issue so that it will be covered by insurance; to put money towards raising awareness through public service announcements; and to increase information in schools to end bullying. You can help raise awareness by writing a letter to your local elected official or visiting them in person through town hall meetings or one-on-one appointments.
Host a fundraiser and donate the proceeds to research or a support group
The vitiligo community needs funds for research, events like World Vitiligo Day, awareness campaigns like the “Vitiligo: Truth, Hope and Change” video and more. Host a bake sale, car wash, dinner, 5K race or any other type of event to raise funds that can be donated to a non-profit or support group of your choice. Start by reaching out to dermatology offices or support groups in your area to build support for the event. Find a cause to raise funds for. And then get planning!
Volunteer your time and talents to non-profits and support groups
Help the vitiligo community by doing what you’re good at! Are you a natural-born leader? Start a local support group. Are you an event planner? Host a fundraiser. Are you a photographer? Take pictures for Living Dappled’s blog. Are you familiar with advocacy? Go to Capitol Hill and lobby or get in touch with your local government officials. Are you good with a camera? Create a documentary about life with vitiligo. Are you good at customer service? Volunteer to help at next year’s World Vitiligo Day. The opportunities are endless and together we can make a difference.
Share your own story with media, through vitiligo blogs and on social media
According to John Harris, director of the University of Massachusetts Vitiligo Clinic and Research Center, everything that needs to be done for vitiligo patients, including funding, research and lobbying, comes back to raising awareness by telling the stories of people with vitiligo – including your story. Share your experience with vitiligo by reaching out to a local newspaper; posting photos on social; or contacting local nonprofit organizations and blogs like Living Dappled.
Erika Page is the Founder and Editor of Living Dappled. After getting vitiligo at the age of seven, she lost 100% of her pigment to the condition and today lives with universal vitiligo.