Twelve years ago a close family friend was diagnosed with ALS, or Lou Gehrig's disease. When he was diagnosed he was given 6 months to 2 years to live. He was part of a study that was testing out a new medications to hopefully help with some of the symptoms of ALS. Well, 12 years later he is still alive. He is in a wheelchair and can no longer make intelligible speech, but his mind is fully functioning and worked up until about 2 years ago from home. He gets to watch his kids grow up and they still go to Disneyland and the Rodeo every year. It may not be about kids, but it is a positive one and has been very positive for his family. He does not know if he was given the actual medication or the placebo pill, the research is still being carried out.
I also know a family who has been involved through the University of Washington in a sibling study about the effects of Autism on sibling groups. They feel that this has been very successful because they are provided with a lot support from the University research team. This family has two children with Autism. The family feels a lot of the questions they have had about why both their children have Autism have been answered. This study will continue for a long time, but they like the support they are getting.
You bring up a point I had not considered, Abby, this could give families up to date information that might not other wise be privy to.
ReplyDeleteI am so happy with you for your friend. ALS is one those diseases that we seem powerless to do anything about. How great it would be if medicine found an upper hand.
Thanks for this news.
Bobbie
Abby, these are great examples of the potential positive effects of research. I didn't realize that families who participate in research programs receive support from staff. That's a great benefit.
ReplyDeleteResearch does so much for the individual as well as for the family. It provides the individual and family with hope for tomorrow. Everyday new research is being performed and someone is given a second chance to get better for themselves and their love ones. We all need miracles whether we are a child or an adult. Thank God for researacher and the people that are willing to be a part of the research process.
ReplyDeleteHi Abby,
ReplyDeleteI know that some research can be done in the wrong way and some people are always up to no good. But when you have GOOD people do good for all who are sick I sometimes forget about the bad. I know I shuould not but I try to always see the good. What a testimony you shared with us about your friend with ALS and the family with children with Autism. We have to join in with our own positive research so the world can see more good in reserch.