From Hobby to Hope: How a Mother’s Love is Fighting FD/MAS in France

Whether you love the cooler temperatures of fall, or hate it, Aurélie Lagneau of France has given the FD/MAS community a new reason to be enthusiastic about sweater weather. This avid knitter has taken her skill with yarn and her love for her daughter to create a unique fundraiser, Supportive Skein, which has already raised $28,000 for FD/MAS research.

Aurélie and her husband lived a busy life in Paris, France when they welcomed their daughter, Gaïa in 2015.  At just one month old, Gaïa was suffering with advanced stages of cushings syndrome, and was diagnosed with McCune-Albright syndrome. Gaïa turned three years old this September, and has already had several surgeries for her FD. “She has had 2 spinal fusions on her neck, so she can no longer move her head,” explains Aurélie, “Since the surgeries, she doesn’t want to eat, so she is fed by gastrostomy.” To focus their attention and take care of their daughter, the Aurélie and her husband left their jobs and moved to the French countryside.

Like many of the patients and families who help the FD/MAS community by fundraising, Aurélie was determined to do something to help her little girl. “Because I am a knitter, I knew how to reach other knitters and designers who might be willing to help,” explained Aurélie. On Rare Disease Day 2018, she launched The Supportive Skein, a fundraiser that taps into the enthusiasm of the knitting community to raise research funds. Through Supportive Skein, crafters can buy knitting patterns and the proceeds all go toward FD/MAS research.

“Every month I had at least a donation from a designer, and around 500€ to 1K€ for FD/MAS research,” said Aurélie, “But quickly, yarn dyers asked to be part of the challenge too. So now I have at least two donations each month. The designers create a pattern, and the dyers create a new colorway and the proceeds of this specific colour skein is donated.” Now, other artists have become interested in helping and Supportive Skeins have brought their work and their fans to the cause. Aurélie now sells mugs, bags, and other items with beautiful artwork and drawings on them as well.

In addition to raising money, Aurélie also works to raise awareness. “From the beginning, I tried to educate people who have no idea about FD/MAS.” On the Supportive Skein Instagram page, Aurélie shares a Wednesday Awareness post with funny pictures and a sentence about the disease or about a FD/MAS patient. She has also helped to launch a new patient organization in France, MASFD has 130 members already and continues to grow.

“In the beginning, my goal was to reach $30,000, but now I plan to reach $60,000 so that we might fund a new research grant entirely,” said Aurélie. She already has plans for developing her own brand of wool dying, and to bring the project from France to reach world wide. “In France, it’s become quite popular. I have many famous designers involved already. Now I’ve reached out to over a dozen designers from across the world to create a calendar of new patterns for 2019.” You can find the beginnings of her website in English here. Aurélie’s goal is to have a full grant ready in 2020 for FD/MAS research.

Aurélie manages the entire project on her own, including recruiting new designers, posting about the new designs and color-ways, and sending out products to customers and lottery winners. It is a clear labor of love for her daughter and an inspiration for how one person’s hobby can become a powerful way to take action. You don’t have to be a PhD fellow. You don’t have to be a wealthy philanthropist. With determination and an idea, Aurélie is taking matters in her own hands and pushing for FD/MAS research.

Visit her store or find her on Instagram here. @echeveausolidaire