Light Up for Rare and Share Your Retinoblastoma Colours on February 29!
Monday February 19, 2024
Retinoblastoma is a rare cancer, affecting around 1 in 16,000 live births. Rarity poses challenges from pre-diagnosis through treatment and lifelong care – Rare Disease Day matters to our community! Discover how you can glow bright on the evening of February 29 to help form a Global Chain of Light for everyone living with rare childhood eye cancer and its effects.
In the vast array of medical maladies, certain diseases shimmer with attention-demanding intensity, not for their prevalence, but because they are rare. Among these, retinoblastoma glows with a poignant call to awareness.
Rarity presents unique challenges in diagnosis, treatment, lifelong care, and research that underscore the vital need for global community, collective action, and ongoing support. As we approach Rare Disease Day on February 29, the rare disease world gears up for a luminous display of solidarity through the “Light Up for Rare” campaign. We’re excited to share this with our Rb community, and hope many of you will get involved too!
Rb survivor, Princess Lyra, at a Medieval Times dinner during WE C Hope USA’s Midwest Family Weekend in July 2022.
Rare Childhood Eye Cancer
Retinoblastoma is a formidable adversary. Developing in the eyes of children primarily before two years old, its impacts and related genetic risks often extend throughout life. Its rarity significantly impacts every stage of the patient’s journey – from pre-diagnosis through treatment, and survivorship, to the research needed to advance all aspects of care.
Among many challenges posed by rarity, three of the biggest are:
Early detection: few primary doctors will see even one child with retinoblastoma throughout their career. Though the signs are easy to identify, lack of awareness among parents and healthcare professionals often leads to delayed referral. Delayed diagnoses complicates treatment and reducing the potential for good outcomes.
Second Cancers: This complex cancer poses lifelong increased cancer risks for survivors with an RB1 genetic mutation. They require diligent primary care and lifelong oncology follow-up, but often struggle to access appropriate care from well-informed professionals. Many who develop second cancers are diagnosed late, with much lower potential for cure.
Research: We need to better understand the complexities of Rb and improve strategies for care. Yet patient numbers, resources, and funding are scarce and scattered in small pockets around the world.
In this landscape, collective awareness raising and community support are vital to help advance knowledge, care, and survivorship worldwide.
Rare Disease Day – A Global Call to Action
Rare Disease Day, marked on February 28 or 29 each year, is a global movement shining a light on the myriad rare diseases like retinoblastoma that impact 300 million individuals and their families around the world. This day rallies support from diagnosed people, their relatives and supporters, healthcare professionals, scientists, policymakers, and the public.
Events and collective actions emphasize the importance of rare diseases in the global health agenda, advocating for better resources, research, and policies to support everyone affected. For all who care about retinoblastoma, Rare Disease Day is a particular opportunity to:
- Highlight the signs and potential for early diagnosis.
- Raise awareness of how living with the rarity of Rb affects our lives.
- Strengthen our small community united in hope and action.
Light Up for Rare in the Global Chain of Light
Glow bright on the evening of February 29, and help form a Global Chain of Light for everyone living with a rare disease like retinoblastoma.
Everyone can participate in this simple show of solidarity on Rare Disease Day. The campaign invites you to decorate and light up your home, your community, or yourself with the Rare Disease Day colours (green, pink, blue, maroon, purple) at 7 PM your local time on 29 February.
You can express your support in endless ways with garlands, candles, disco lamps, colourful decorations, social media filters, and more. Decorate yourself too with vibrant clothes, accessories, make up, and perhaps even face paint! Let your creativity shine. Display a Rare Disease Day poster in your window in the days before February 29 to help explain your decorations and the event.
Take a photo or video of yourself with your vibrant show of support, and share it on social media to magnify the message. Use the hashtags #RareDiseaseDay, #LightUpForRare, #ShareYourColours, and #WECHope, and official campaign ”Global Chain of Light” filters. Link to our website, or tag in our social media to help build more awareness!
Large or small, your offering of light is a tangible manifestation of support. You signal to those around you and to the wider world that all who live with and fight retinoblastoma and other rare diseases are seen, that we matter, and you stand with us. As communities across the globe join in this luminous act of solidarity, we bridge the distances between us, creating a bold network of hope and advocacy.
Video alt-text description
A rapid series of images show landmark buildings lit up in a rainbow of Rare Disease Day colour against indigo and deep night skies. Text follows in white on a series of bright block backgrounds in Rare Disease Day colours.
This 29 February, show your support for Rare Disease Day.
How?
Join the Global Chain of Lights.
Share Your Colours
And Light Up For Rare!
Just follow these simple steps:
- Turn off your lights.
- Play this video in your window to light up the night.
- Share Your colours with friends and family…with your neighbours…with the world!
This video includes a 40 second introduction, and 30 minutes of plain screen that slowly changes through the bright bold colours of Rare Disease Day. Start the video and put it in your window for a quick and simple way to join the campaign! You can also download the Light Up For Rare video.
Let Your Creativity Shine Bright
Bathe your world in the glow of green, pink, and blue lights as a beacon for rare. Embrace the “Light Up” spirit and let your expressive imagination fly. Here are some ideas to spark your creative flair!
Simple Ways to Get Involved in the Light Up for Rare Campaign
- Welcoming Lights: Decorate front-facing windows with candles, fairy lights or light-up decorations in the RDD colours. Change porch lights to the RDD colours.
- Light-Up Wonders: Use glow sticks or light-up toys in RDD colours to decorate strollers, scooters, bicycles, bags, hats, and other objects when out-and-about.
- Window Art: Use glow in the dark decorations and washable paint to decorate the windows with your kids.
- Glowing Crafts: Create simple crafts with kids using RDD colours in luminous materials such as glow-in-the-dark paint, playdough, or glitter.
- Sidewalk Chalk: Decorate your driveway or sidewalk in RDD colours with an awareness message about retinoblastoma and Rare Disease Day.
- Family Photo Shoot: Plan a family photo shoot in RDD colours. Share the photos, along with your Rb story or why RDD matters to you.
- Dress to Impress: Wear the Rare Disease Day colours across your clothes and accessories such as hair ties, scarf, jewellery, bag, and shoes.
- Rare Hair: Temporarily dye your hair in RDD colours.
- Blow Glowing Bubbles: Use glow-in-the-dark bubble solution to light up. The deep breathing required is also great for helping to ease stress!
- Community Walk: Host a small neighbourhood gathering where everyone can craft their own lantern in the RDD colours, then parade through your community at dusk in a moving constellation of hope.
Remember to #ShareYourColours on social media! Join the conversation and inspire others to Light Up For Rare in their corner of the world.
Triplets with Cancer: A Rare Retinoblastoma Story
Among the countless stories within our small global retinoblastoma community, some stand out for their exceptional rarity. The Low Family in Alberta, Canada, has such a story to tell.
Naturally conceived identical triplets are rare. The Low Triplets are rarer still because all three babies were diagnosed with cancer in both eyes after their father, a doctor in family medicine residency, photographed a white pupil glow in one of his boys’ eyes.
The family embarked on an epic journey through diagnosis, treatment, and beyond. Their story is a testament to the unexpected twists of fate, the importance of early signs awareness, and the strength found in unity.
Mom, Leslie, offers invaluable insights and encouragement to others navigating a similar path of seemingly overwhelming proportions. She underscores the importance of taking action when you think something isn’t right – even something tiny like a misshapen pupil; and the power of shared experiences in fostering hope.
Read the Low Family’s story: Triplets with Cancer: Surviving and Thriving Through the Unexpected
Leslie and her 7 month old triplets, Mason, Thomas, and Luke, during an EUA day at SickKids Hospital, Toronto, Canada.
Share Your Colours
The Light Up For Rare campaign encourages people to share their rare disease story, or insights into the experience of living with such a diagnosis. By sharing our experiences, we open doors to conversations that lead to earlier diagnosis, better patient care, and ultimately, improved quality of life.
The campaign builds a global movement of awareness, understanding, and hope for all rare disease. Together under its banner, we can nurture a world that is informed, compassionate, and proactive in response to retinoblastoma.
Light Up for Rare is a visible statement of solidarity for all who live with rare diseases. By sharing our light and our stories around and on February 29, we weave a tapestry of hope that spans the globe.
In the face of daunting challenges, our simple collective action can have profound impact. In unity, we raise awareness of Rb, and we contribute to a larger story of hope, resilience, and the relentless pursuit of a better future for all affected by rare diseases.
You can find more Light Up For Rare information, resources, and instructions on the Rare Diseases Day campaign website – where families and survivors can also share your story with the Rare Disease Day team to help raise awareness.
Light Up and Share for Rare at One Rb World 2024!
In the glow of this collective effort, we find a powerful truth: no one stands alone. Together, we can change lives.
Rare Disease Day is one moment in the year, but the movement, the need for progress is ongoing. As a global retinoblastoma community, we are coming together this October to illuminate and tackle many of the challenges we face because of its rarity. Would you like to join us?
In a glorious convergence of colour and hope, families, survivors, medical professionals and researchers will unite at One Retinoblastoma World in Hawaii, October 15-17. Three days of community, conversation, and collaboration working towards the best possible care.
About the Author
Abby’s father was diagnosed with bilateral retinoblastoma in Kenya in 1946. Abby was also born with cancer in both eyes. She has an artificial eye and limited vision in her left eye that is now failing due to late effects of radiotherapy in infancy.
Abby studied geography at university, with emphasis on development in sub-Saharan Africa. She co-founded WE C Hope with Brenda Gallie, responding to the needs of one child and the desire to help many in developing countries. After receiving many requests for help from American families and adult survivors, she co-founded the US chapter to bring hope and encourage action across the country.
Abby enjoys listening to audio books, creative writing, open water swimming and long country walks.
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