New Jersey Conference Wrap Up

New Jersey’s Patient & Family Conference Delivered Answers, Support, and Hope!

In the great “garden state” of New Jersey, AA&MDSIF brought together more than 130 patients, family members, friends, and health care professionals for the Living with Aplastic Anemia, MDS or PNH Patient & Family Conference. Thanks to our excellent presenters and enthusiastic attendees, the fourth conference of 2012 was a success.  

The Sessions and the Experts
Ten informative sessions on bone marrow failure disease were presented, along with four support forums. These interactive sessions provided attendees with a valuable opportunity to not only learn about the latest developments in research, clinical trials, and patient care, but to also have some one-on-one time to speak with some of the foremost experts in the field.

AA&MDSIF  was fortunate to have some of the top healthcare professionals from the area with us for the conference on July 28. Partnering with Dr. Azra Raza from Columbia University, Dr. Stuart Goldberg from the John Theurer Cancer Center presented two sessions on MDS. Dr. Danielle Townsley from NIH was with us again to present on aplastic anemia, and Dr. Adrianna Vlachos from the Cohen Medical Center of New York presented a session on bone marrow transplantation.

Attendees were extremely impressed with the session on PNH presented by Dr. Ellen Friedman from the Montefiore Einstein Center. The Living Well sessions were well attended with the highly-regarded Dr. Kathleen Wesa from Sloan Kettering presenting on complementary and alternative medicine. Heather Younker from the John Theurer Cancer Center presented on nutrition, and the Cancer Institute of New Jersey’s Tracy Krimmel talked with attendees about the always important topic of managing fatigue.

Dr. David Margolis traveled from the Medical College of Wisconsin to spend time with the children who were present for our Kids Only program, and he spent time with parents during the Parents Q&A session. Dr. Ramon Tiu came in from Cleveland to present the well-received session on understanding thrombosis and other long-term issues in PNH. Anita Vargas from John Theurer facilitated the PNH support forum and for the fourth time this year, Jane Meier Hamilton from the National Family Caregivers Association facilitated another successful caregivers forum.  Because these busy professionals are willing to give of their time and expertise, AA&MDSIF is able to provide patients and their families with the information and answers they seek.

Eleven kids came together to learn about bone marrow failure during our kids only program. "Dr. Dave" spent the morning talking with kids and answering their questions. The kids helped Dr. Dave with his famous bone marrow garden and received one-of-a-kind bone marrow garden souvenirs to take home. The kids viewed slides of what a normal bone marrow looks like versus a bone marrow that was affected by aplastic anemia. Later in the morning, the kids worked with an art therapist on various art projects. Everyone learned about designs, different textures, colors, and how to make art fun. The afternoon was spent with fun free time- watching moviesand playing games, and the kids met others who are also going through the same challenges of dealing with bone marrow failure disease.  The program ended with a special ice cream social for the kids. 

Inspiration
The conference day ended with the uplifting and empowering Celebration of Hope where the attendees were truly inspired by Carl Frankel, a New Jersey survivor of MDS who underwent a bone marrow transplant just this year. Mr. Frankel credited his family and friends with helping him through his journey, especially his lovely wife, Ellen. AA&MDSIF was extremely honored to have him with us as the Survivor Spotlight speaker.

If you weren’t able to attend any of our four conferences thus far this year, please take a moment to review our schedule for future 2012 conferences.  There will be two more conferences this year in Dallas and Chicago, and we hope one of them will be convenient for you to attend. In the meantime, there are many opportunities for you to learn, gain 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.
• View answers to some of our most frequently asked questions.
• Learn about the latest research on aplastic anemia, MDS, and PNH.
• Consider becoming a Peer Support Network Volunteer, conducting a fundraising event, or helping AA&MDSIF move important legislation forward by contacting your federal representative.

We thank our New Jersey attendees for joining us and hope that you left feeling more connected and better informed. Please remember that we are always here to you with answers, support and most importantly hope.