Grassroots Campaign Brings Awareness to Rare Disease in Memory of Local Resident

New Fairfield residents will be seeing lots of red bows, lights, shirts, decorations and more around the area starting March 3 and continuing until March 10, as part of the Operation Wear Red Campaign organized by the Julia’s Wings Foundation to raise awareness of aplastic anemia, a rare bone marrow failure disease that affects just one in 250,000 people each year. While the disease can affect anyone at any age, it is most common in children and young adults. The campaign, now in its 5th year, is held in honor of local resident Julia Malsin and seeks to educate the general public about the disease and how they can help children and families affected by it. Julia, who passed away in 2012 at the age of 13 had just one wish, that children battling the disease would never be alone in the hospital as they underwent lengthy treatment. Her parents and sister, Heather, Mike and Alyssa Malsin, along with a group of dedicated community members established the Julia’s Wings Foundation (JWF) in 2013 to provide financial assistance to families touched by aplastic anemia, raise funds for research and to increase awareness of the disease. Since its inception, JWF has assisted over 165 families impacted by aplastic anemia by issuing grants in excess of $210,000, partnered with over 52 hospitals across the country and partnered with the Aplastic Anemia & MDS International Foundation, to dedicate a total of $120,000 to aplastic anemia research.

Held in conjunction with the National Organization for Rare Diseases’ (NORD) Rare Disease Day on February 28, 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. Julia’s Wings is also tracking national participation.

“It is in Julia’s memory that we are providing hope for these families that have no where else to turn due to the rarity of the disease. Most people have never heard of aplastic anemia, and funding just isn't available. The way that people have stepped up to support our work is nothing short of remarkable. We are humbled and grateful. No parent should ever have to choose between caring for their child, paying their mortgage or putting food on the table.” Heather Malsin, Vice President, Julia’s Wings Foundation and Julia’s Mom.

A list of ways to get involved is available at www.operationwearred.org and on the Julia’s Wings Foundation Facebook page.