Aplastic Anemia and MDS Awareness Week

Aplastic Anemia and MDS Awareness Week has moved to March 1-7 in conjunction with the National Organization for Rare Disorders (NORD)’s Rare Disease Day on February 29.  

Aplastic Anemia and MDS Awareness Week was created to raise awareness about acquired bone marrow failure diseases that are diagnosed in more than 15,000 people each year in the United States alone, with tens of thousands people more living with these life threatening diseases around the world.

Are you or a loved one affected by aplastic anemia, MDS, PNH or PRCA?  Then you are one of the faces of bone marrow failure disease.

Help us raise awareness in your community by giving a few hours of your time.  We need your help to make an impact during this special week devoted to raising awareness in communities across the country about what these diseases are, how to get help, and what AA&MDSIF can do to support patients and families.

There are three simple things you can do to let others know who the faces of bone marrow failure disease are.

1.    Share your story  

• Share your or your loved one's experiences with a bone marrow failure disease.  Let others know how you have been affected by a bone marrow failure disease and how you have coped with your disease.
• There are many ways you can share your own story.  You can organize a lunch-time talk, write a blog, contact your local paper, or use social media like Facebook to tell your story. Share it with AA&MDSIF as a Story of Hope.

2.    Spread awareness in your local and global community  

• Locally, you can hand out AA&MDSIF brochures, distribute Bravery awareness bracelets that you can purchase on our Web site, download a poster to hang in your office, or organize a lunch-time talk.
• Globally, you can let others know about bone marrow failure disease and AA&MDSIF through social media, blogs, email, and postings on community calendars.  In addition, you can forward the eInsider to everyone you have an email for – family, friends, colleagues, and your health care professional. They will learn more about these diseases, help them understand what you are facing, and might even help someone else they know who has yet to be diagnosed.

3.    Set-up a simple awareness event

• Organize a bone marrow drive and help other patients who are in dire need of a bone marrow transplant. Distribute AA&MDSIF brochures at the same time, and you can educate others in your community about bone marrow failure disease.  
• Organize a work place gathering. In 2 hours, you can start off your colleagues’ day by providing a simple breakfast of bagels/muffins and juice, have a brown bag luncheon where you provide dessert, or step out for a lunchtime walk with your colleagues. At each of these, you can educate your co-workers about bone marrow failure diseases and why you support AA&MDSIF. Let them know why supporting our programs makes a difference.
• Organize a fundraising and awareness event. There are many different events you can easily organize to raise awareness – and raise money at the same time. Through an event, you're able to reach out to others in your community to educate them about bone marrow failure disease.
• Organize a House Party. A house party is an event, held in your home, to which you invite people you know. It can be a morning brunch, an afternoon tea, or an evening wine and cheese gathering. Light refreshments are served, and at some point during the event, someone talks to the gathering about AA&MDSIF and bone marrow failure disease. You can plan one in just 5 simple steps. Learn how easy this is to do!

Want help contacting your local media? Need assistance with an idea?  Want to reach other patients and family members through AA&MDSIF in your community?  Contact Martha Crews at (301) 279-7202 x103 or by email, and be sure to send us an email letting us know what you did to help celebrate 2012 Aplastic Anemia & MDS Awareness Week.