|
Family Support >>> |
|
Third International Family Conference
NBIA Quotes - August, 2005 |
|
Every speaker, even many of those who asked questions or made comments from the audience at the Third International Family Conference, often had something wise or insightful to say about NBIA, chronic illness or their lives. Here is a sampling of remarks that we hope will give you a flavor of the conference: “My parents took everything one step further….They didn’t keep me in a plastic bubble.” Brianne Schwantes, talking about her parents threw her in a swimming pool with her clothes on to strengthen her muscles, despite a disease that causes her bones to break easily “Talk about grief, write about it, get it out of your head…Grief comes to all of us and stays for a while.” Brigid Guttmacher, a licensed professional counselor, speaking on a panel about loss “My son never walked and crawled. But he paid my bills online.” Patti Hackett, a parent, remembering her son who was physically disabled but mentally agile When he died, “I wasn’t expecting it to be that painful, but the memories are wonderful.” Patti Hackett “I never knew what it was like to be completely normal, so I never missed it.” Brianne Schwantes “It’s a cascade. We don’t know where the head or the tail of the dragon is.” Dr. Jane Gitschier, speaking about whether the iron buildup in the brain causes the disease or is the result “Find a case manager or a social worker to fight for you….Don’t take no for an answer.” Advice from a parent, Bela Ferreira-Barbiero “If you’re not happy, your kids aren’t going to be happy.” Kris McGourthy, a parent “Don’t let their disease stop you from enjoying life. If you do, you’re cheating them and you’re cheating yourself.” Bela Ferreira-Barbiero “This was a lonely endeavor five years ago. …Now, there about five of us, maybe 10. (And) we can learn from research going on in other fields.” Dr. Susan Hayflick, key NBIA researcher “I’m pretty confident we’ll be able to find at least one more gene.” Dr. Susan Hayflick |
|
|