The Athena Diagnostics Family Services and Care Forum followed the opening speeches and Keynote Address.

The theme of the forum was "Maintaining the Integrity of the Person with HD and the HD Family." Presentations were made by a woman at risk, a man with HD, a caregiver, Ruth Hargrave, Jim Pollard, the director of Laurel Lake, Randi Jones, Ph.D., and Robert Ferrell, M.D. Peter Como, Ph.D. served as moderator.

Dr. Jones spoke about the way that being at risk for HD affects one's life. She stressed that she is neutral about the issue of testing. There are good reasons to test and good reasons not to test. Good reasons to take the test include wanting to reduce uncertainty, family planning, decisions about careers and education, and in the case of older people who have remained symptom free, the desire to be able to tell children and grandchildren that they are out of the woods. Some good reasons that have been shared with her about deciding not to test include concern about insurance or employment discrimination, the fact that there are no current treatments, worry about symptoms if the test is positive, and a perception of time that has shifted from the future to the present.

Testing however, is only one choice faced by those at risk. "You don't make one decision about being at risk, you make decisions all the time." There is the concern about who to tell and at what point in the relationship. These decisions are often discussed in terms of safety ("Is it safe to tell…?") and basically involve the issue of how much HD is going to be a part of the individual's identity. There are also caregiving decisions, make even more difficult by the sense of multiple generations being involved.

Jack S. spoke about having HD. He recommended that people with the illness find ways to enjoy life. He finds meaning and enjoyment in spending time with his children, volunteering with an agency, helping to maintain a walking trail, attending a support group, and being on the computer where he can maintain independence by shopping online and keep in touch with others through e-mail.

Dr. Ferrell said that, "There is something very special that comes from people [with HD or at risk for HD], perhaps because a crisis can bring out the one's best, that provides a role model for the rest of us." Maintaining the integrity of the individual involves adapting to change by using the strengths that one has and learning new skills.

Ruth Hargrave spoke eloquently of being a caregiver for her husband and two children with HD and about raising a grandchild. "Life is like a picture, so paint it well."

Jim Pollard, Director of the Huntington's Disease Program at Laurel Lake Center for Health and Rehabilitation in Massachusetts said that caregivers deserve Master's Degrees and pHDs deserve Ph.D.s for learning how to adapt and endure. "We as professionals are in awe of your endurance and we respect your expertise." He recommended that families who want to develop a good relationship with professional caregivers tell them their stories and 'over reward' them. Families who are positive about the work of professional caregivers when they are doing a good job, help to motivate them.