Shades of purple will soon be flooding the streets of Saugeen Shores. The 5th annual “Paint the Town Purple” campaign by the Liv-A-Little Foundation is an ever-growing event that grips the community throughout the month of August.
Liv-A-Little Foundation founders Erin and Chad Little started the “Paint the Town Purple” campaign five years ago to increase awareness of Cystinosis, a rare disease that their 9-year-old daughter Olivia Little lives with.
Cystinosis is a rare “orphan” metabolic disease characterized by the abnormal accumulation of the amino acid cystine. As the cystine accumulates in cells, it slowly damages organs including the kidneys, liver, thyroid gland, eyes, muscles and brain. The rare genetic disease afflicts approximately 75 children and young adults in Canada and only 2,000 worldwide.
Purple is Olivia’s favourite colour, and as such it became the Foundation’s signature colour. With the help and on-going support of Keepsakes and Memories in Port Elgin, businesses, residents and local organizations have purchased purple bows and decorated their spaces with all things purple. Over the past four years, over $10,000 has been raised for the Foundation through the sales of these bows.
“When we came up with the idea to ‘Paint the Town Purple’ we originally approached local businesses, asking them to decorate their windows with anything purple they may have had. We were thrilled that in the first year 13 businesses came together to help us raise awareness,” said Erin Little.
Little said that the Foundation did not initially intend for the campaign to raise funds, but it has grown organically as more and more members of the community wanted to help and support the rare disease.
“We just love Saugeen Shores and love driving around to spot all of the purple, often displayed by complete strangers” Little continued. “By hanging bows we start a conversation about Cystinosis. Conversations bring us hope and lead us to a cure.”
Purple bows can now be purchased at Keepsakes and Memories, 545 Goderich Street in Port Elgin. The large purple bows are hand made by owner Chris Swain, and sell for $15 each.
“I make the purple bows to help the Little family raise awareness of Cystinosis, raise funds for the Liv-A-Little Foundation and help reach the ultimate goal of finding a cure,” Swain said.
Through educating, promoting and funding, the Liv-A-Little Foundation is committed to raising awareness and funds for the advancement of treatments, with the ultimate goal of finding a cure for Cystinosis.
“The cure is closer than ever before and we believe that it’s the love for Liv that will build it,” Little exclaimed. “In December 2018 the FDA approved the first human clinical trials for stem cell and gene therapy treatment for Cystinosis. This approval brings us closer than ever to what we believe will be the cure.” In fact, a $12 million grant has been issued to the University of California, San Diego to begin the first human clinical trial for the treatment of Cystinosis this July.
“With these recent developments, there is great hope that one day Olivia could choose to be cured” Little added.
The Liv-A-Little Foundation urges you to join the hundreds of residents and businesses throughout Saugeen Shores and decorate your home or business with anything and everything purple.
“We could never have envisioned what the community of Saugeen Shores has done for our family, and driving around town seeing all of the purple gives us so much hope for Olivia’s future” Little concluded.
If you would like any more information on “Paint the Town Purple” and how you can help please feel free to contact Erin Little at erin.little@livalittlefoundation.com or 519-386-5188.
