Fibrodysplasia Ossificans Progressiva (FOP) is a rare genetic disorder that causes the soft connective tissue of the body, such as the muscles, to gradually turn to bone. There are only 45 confirmed cases of FOP in the UK.
Children affected by FOP gradually lose their range of movement as their muscles, tendons and ligaments calcify. The life expectancy of children affected by FOP is reduced as bone eventually grows around the lungs, affecting breathing.
Louise has given us incredible support, here she is attending our T-shirt launch party in Edinburgh with our other fabulous patrons Jono Lancaster and Tallia Storm.
Louise with fellow ambassador Jono Lancaster and Tallia Storm
Here is a recipe to get your Jeans for Genes Day baking off to a flying start!
Jeans Sugar Cookies
8 fl oz all-purpose flour, plus more for rolling
1/2 teaspoon baking powder
1/4 teaspoon salt
8 fl oz unsalted butter, room temperature
8 fl oz granulated sugar
1 large egg
1 teaspoon vanilla extract
Blue icing sugar for decorating
In large bowl, whisk flour, baking powder, and salt. With an electric mixer, cream butter and sugar until light and fluffy. Beat in egg and vanilla. With mixer on low, gradually add flour mixture; beat until combined. Divide dough in half; flatten into disks. Wrap each in plastic; freeze until firm, at least 20 minutes, or place in a resealable plastic bag, and freeze up to 3 months (thaw in refrigerator overnight).
Preheat oven to 325 degrees. Line baking sheets with parchment. Remove one dough disk; let stand 5 to 10 minutes. Roll out 1/8 inch thick between two sheets of floured parchment, dusting dough with flour as needed. Cut shapes with a jeans cookie cutter or cut out freehand using a sharp knife. Using a spatula, transfer to prepared baking sheets. (If dough gets soft, chill 10 minutes.) Reroll scraps; cut shapes. Repeat with remaining dough.
Bake, rotating halfway through, until edges are golden, 10 to 18 minutes (depending on size). Cool completely on wire racks. To ice cookies, spread with the back of a spoon. Let the icing harden, about 20 minutes. Decorate into lovely blue jeans and sell at your school or workplace!