This week, there will be an opportunity to start your Christmas shopping while also helping find a cure for Juvenile Myositis.
The fourth annual Christmas Shop for Cure JM is Nov. 7 from 9 a.m. to 2 p.m. Admission is free. All proceeds go to benefit Cure JM and to fund research for the incurable and rare disease.
The event will be held in the Sacred Heart School gym. The entrance is the main entrance of the school/church, which is different from years past.
According to organizer Kristine Alderfer, this year’s event has 50 vendors – 15 more than last year. There will be items for men, women and children. Shoppers will find a variety of items like pottery, wreaths, ornaments, stationary, food and oils, decorative glass, jewelry, hammocks, beef jerky, a brow bar and more.
“We will have food for sale, a bake sale and Driveline Coffee will be outside making specialty coffee drinks with a percentage going to Cure JM,” Kristine said.
Kristine’s daughter, Katherine, has been battling Juvenile Dermatomyositis for 5-1/2 years.
“It's a roller coaster of ups and downs, good news and bad news. She has improved significantly, yet she still continues to show signs of the disease. The disease affects her muscles and her skin, and most of the symptoms occur on the inside. She looks fabulous on the outside, but sadly, inside, her body is still fighting this disease off,” Kristine said.
Katherine still gets infusions every four weeks. Those infusions take place at Riley Hospital for Children and they last for eight hours. She has a surgically implanted port and the medicine goes into her body through that port. While the infusions are not painful for her, they cause severe side effects for most kids and they are boring and long. Plus, she has to miss school for it, Kristine said.
“Right now we don’t see an end in sight to all of this, but we continue to take steps forward to improve her situation and to cut back on the inflammation that is occurring,” she continued.
Kristine said Katherine is the strongest 9-year-old that she knows and she is helped tremendously by her twin sister, Caroline, and by her loving friends and family.
“Someday, we will be able to use the word ‘remission’ for her!” Kristine stated.
JM affects only three out of a million children and is so rare that there is no government funding that goes into research, which is why it is called an “orphan” disease.
All of the money that is raised to go toward research comes from grassroots fundraising efforts such as the Christmas Shop for Cure JM.
In the past year, the JM community has lost three children to this “horrible disease,” Kristine said. A common cold, fever, flu or stress can trigger the disease. Katherine cannot be in the sun at all, because the sun is the biggest trigger for the disease.
(Story By The Times Union)
