Washington, DC Conference Wrap Up

AA&MDSIF Kicks Off 2012 Patient & Family Conference Series in Washington DC

Our first 2012 Living with Aplastic Anemia, MDS or PNH Patient & Family Conference was held March 24th in Bethesda, Maryland, near our nation’s capital. The first event in our conference series was a great success and that success is due to the over 130 participants who spent the day with us. Patients, along with family members, caregivers, and friends, gathered together to learn, share, support, and celebrate. AA&MDSIF presented 13 informative and relevant sessions on bone marrow failure disease. These interactive sessions provided attendees with a valuable opportunity to not only learn about the latest developments in current research and patient care, but to also have some one-on-one time to talk with some of the foremost  experts in the field.

Since many patients have never met another person with aplastic anemia, MDS or PNH, these conferences are designed for patients to have the time to meet with others who can honestly say, “I know what you are going through.” For all attendees, connections were made, stories were shared, and many patients left having made new friends.

The support forum was great. We got to talk patient-to-patient and be completely honest with each other.

--Lou

New This Year - Support Forums

These informal sessions were led by health care professionals as an opportunity to share experiences and challenges in a supportive and nurturing environment. With specific forums for aplastic anemia, MDS, and PNH patients, as well as one for caregivers, these sessions were the perfect way for attendees to “open up” and connect with others. The response from attendees was extremely positive and we plan to continue these forums at future conferences.

The day ended with the uplifting and empowering Celebration of Hope where participants were truly inspired by Brian Rowe, a 14-year survivor, who celebrates April 1st as the eight year anniversary of his bone marrow transplant. Brian is the coordinator of the Baltimore Community of Hope, and AA&MDSIF was extremely honored to have him with us as the Spotlight speaker. Read his story.

If you weren’t able to attend our first event of the year, please take a moment to review our schedule for all 2012 conferences. With conferences set for Los Angeles, Atlanta, New York City area, Seattle, Dallas, and Chicago, we hope one will be convenient for you to attend. In the meantime, there are many opportunities for you to learn, find support, and connect with others through AA&MDSIF.

• Talk with a trained Peer Support Network volunteer.
• Find a Community of Hope support group in your area.
• Check out the resources on our Online Learning Center. You'll find more than 100 video education programs, including sessions recorded at our 2011 conferences.
• Contact our patient educator for answers to your questions. Call (800) 747-2820, option 1, or email help@aamds.org.
• Consider becoming a Peer Support Network Volunteer, conducting a fundraising event, or helping AA&MDSIF move important legislation forward by contacting your federal representative.
• View answers to some of our most frequently asked questions.
• Learn about the latest research on aplastic anemia, MDS, and PNH.

To those of you who attended our Washington, DC regional conference, we hope that you left the event feeling informed and with a sense of camaraderie and hope. We wish to thank the doctors and healthcare professionals who contributed their expertise to the morning and afternoon sessions. To all patients, family members, caregivers, and friends, please remember that we are always here for you.

Registration is now open for all 2012 conferences with the next one taking place in Los Angeles, California on April 21st. We look forward to seeing you there!