Campaign to Bring Awareness to Rare Bone Marrow Failure Disease in Honor of Local Teenager

For the fourth year in a row, community members will be getting into the action by displaying red bows, lights, shirts, decorations and more around the area starting February 25 and continuing until March 4, as part of the Operation Wear Red Campaign organized by the Julia’s Wings Foundation (JWF) to raise awareness of aplastic anemia, a rare bone marrow failure disease that affects just one in 250,000 people each year. The foundation was founded after the passing of 13 year-old Julia Malsin in 2012, after a year-long struggle that included multiple hospitalizations, treatments and a bone marrow transplant. While Julia’s battle was lost, supporters of JWF continue to bring hope to others in Julia’s memory.

Aplastic Anemia is most common in children and young adults. Since its inception, JWF has assisted over 90 families with grants in excess of $160,000, partnered with 50 hospitals across the country and partnered with the Aplastic Anemia & MDS International Foundation to dedicate a total of $120,000 to aplastic anemia research. Kate MacNamara, Ph.D. is currently leading a research study at the University of Albany College utilizing funds awarded from the first of four research grants to be given in Julia’s name.

Held in conjunction with the National Organization for Rare Diseases’ (NORD) Rare Disease Day on February 28, and leading into Aplastic Anemia and MDS International’s 35th Anniversary Celebration, Operation Wear Red offers many opportunities for people to get involved. Social media profiles and online groups can be changed utilizing downloadable campaign graphics available on the Julia’s Wings website at http://www.operationwearred.org. A Facebook profile picture filter will also be available soon for individuals to use to show their support for the cause. T-shirts are available on a first come, first serve basis and can be requested through the website. Schools, businesses and community groups have already planned activities such as social videos, food and service specials, wear red days and exercise events.  The Mayor of New Milford and the first Selectman in Sherman will be issuing proclamations naming February 25 through March 4 as Aplastic Anemia Awareness Week in their areas. The New Milford Town Green and Town Hall will be lit red for the week.

“Julia’s kindness and grace are reflected through the actions of those who support the Julia’s Wings Foundation. It amazes us every single day. The letters we receive from families, thanking JWF for putting food on their tables or providing fuel to get their children to appointments, drive us to continue the good fight. Due to the rarity of the disease, awareness is key to garnering support to help these families who desperately need, not just assistance, but the hope that comes from people who care about their situation.” Heather Malsin, Vice President, Julia’s Wings Foundation and Julia’s Mom.