HOPE Participant Profile: Lillian Christmas
Ms. Lillian Christmas is an active participant in the BU ADC Research Registry, also known as the HOPE Study (Health Outreach Program for the Elderly). Like all HOPE participants, she undergoes an annual examination as part of the Center’s ongoing study of memory and aging. However, that is only a small part of the story when it comes to Ms. Christmas’ involvement in Alzheimer’s disease (AD) research. She has become a passionate spokeswoman in her community about the importance of research. She has joined the HOPE team on several occasions to give educational talks in the Boston area, and she was a featured speaker at last year’s HOPE Participant Appreciation Luncheon. Ms. Christmas has even filmed an educational video focused on increasing community participation in AD research! We recently sat down with this remarkable woman to learn more about why she is so committed to this cause.
Q: Why is Alzheimer‘s research important to you personally?
A: A very dear friend died from this devastating disease. It was very sad to find out that my friend had been diagnosed with AD. In 1977 it became clear to me that my friend was suffering from something I had not heard mentioned before. The literature available was sparse, at least to the general public, and it did not answer some of the questions being asked. For example, “How do we help persons who have been diagnosed with AD and the caretakers responsible for their care?” Research will improve the quality of our lives during the time of sharing and caring for a loved one with AD.
Q: What has been your personal experience with the HOPE study?
A: I appreciate the patience and compassion I receive from the staff. The HOPE study has been working diligently to inform the elderly, especially African Americans, about the perils of AD. Their quest is lifelong. When the answers are found, African Americans will benefit from new developments in diagnosis and treatments.
Q: Why do you think it is important for African Americans to be involved in research?
A: The researchers need our input [because] there are more African Americans with this disease than other groups. I’d like to know why. More African American participants are needed to assist and find the answers we have been waiting for about the many mysteries of this disease.
Q: What do you think stops people from becoming involved in research studies?
A: There is not enough information reaching the inner city population about what is currently ongoing in research. And, of course, a large percentage of African Americans do not believe in participating in research studies. As children we have been given an unfair rap on science. Another reason is fear of the unknown. People think, “I do not want to become a guinea pig for the sake of some experiment.”
Q: What can you tell us about HOPE‘s Brain Donation Program? Why are you participating?
A: I decided to give the gift of life and signed a consent form for the program in February 2003. There is sensitivity among many African American families that prevent them from considering the donation of an organ of loved ones. This is due in large part to fear and old family rules and beliefs that are held very dear by many family members. But the study needs tissue from the brain to advance in finding treatments for this devastating disease. If my brain tissue will become instrumental in the development of treatments for AD, then yes, the study has my permission.
For more information about the HOPE Study, call 1-888-458-2823.