Grassroots Campaign Brings Awareness to Rare Disease in Memory of Local Resident
February 21, 2017, Sherman, CT – Residents will be seeing lots of red bows, lights, shirts, decorations and more around the area starting February 27 and continuing until March 5, 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 3rd 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 60 families, partnered with 39 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. T-shirts sponsored by Full Circle Promos in New Milford 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, musical concerts, food and service specials, wear red days and exercise events. Some participants include the Sherman School, New Milford High School, Immaculate High School, Brewster High School, Marist College Equestrian Team, the JCC in Sherman, the American Pie Company, The Sherman IGA, The Sherman Senior Center, Hair by Susi, Pamby Motors, Sacred Grounds Coffee Roasters, Creating Cadence, A Paw Print, Earthfit, Kathy Henkel Fitness and many more. Julia’s Wings is also tracking national participation through an awareness map including groups from Canada, Washington State, Texas, Pennsylvania and New York. The Mayors of New Milford and Danbury have issued proclamations naming February 27 through March 5 as Aplastic Anemia Awareness Week in their areas, while the First Selectmen in Sherman and New Fairfield will be doing so on February 23. The New Milford Town Green and Town Hall will be lit red for the week.
“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 full list of participants, activities and ways to get involved is available at www.operationwearred.org and on the Julia’s Wings Foundation Facebook page.
