I received an e-mail from the Alzheimer Advocacy Team requesting that I contact elected officials and request additional funding for Alz. research...and...Followed through. It was easy and I felt good.

Pardon me for being flippant....but....I have a few questons

HOW MUCH IS THE ALZ. ASSOCIATION GOING TO SPEND CHECKING OUT THE DR. TOBINEK – ENEBREL TREATMENT FOR A/D?
It is expensive but appears to be the most promising thing around. Unless I have my figures wrong the cost is cheaper than a year of nursing home care.


HAVE ANY ALZ. ASSOC. EVEN BOTHERED TO READ THE THREAD “ENBREL FOR ALDHEIMER’S” THAT IS ON THE MEDICATIONS AND TREATMENTS OF ALZHERS FORUM.
There are people on this forum whose loved ones are currently using it with some degree of success.

DON’T YOU THINK THAT OUR LOVED ONES MIGHT WELCOME THE CHANCE TO RISK DIEING SOONER BY TAKING PART IN RESEARCH THAT HAS ACTUALLY PRODUCED IMMEDIATE IMPROVEMENT?

My Mom is getting the injections...her improvement is Miraculous. Please stop worrying about the "correct steps", and help us now. We all agree that a Double-Blind study is definitely needed for the people who will be diagnosed with Alzheimer's in the future...maybe even us!!! But right now, we need the insurance companies to approve the Off-Lable use of Enbrel for Alzheimer's. It works, my Mom is living proof. We probably won't be able to keep up the treatments without selling our house unless someone gets through the red tape. What can the Alzheimer's Association do to guide us in the right direction. Off-label use of drugs is perfectly legal and used by many doctors for many different ailments. We need guidance, not scolding like we're little children who don't know what we're talking about.

Sincerely, Felicia McColl

Call for Alzheimer's Association to ADD AGENDA ITEMs!

These Agenda additions will better serve our membership:

1) Dr. Tobinick to report on the use of Enbrel and the Perisinal treatment for AD.
2) Panel Discussions: Off-Label Drug Use and Patient Care.
Two Panel Groups Represented:
a) AD Patients and Caregivers.
b) FDA, Medical Community, and Drug Companies.

ICAD
The Alzheimer's Association International Conference on Alzheimer's Disease (ICAD) brings together the top dementia researchers every two years to engage in a multidisciplinary international exchange of ideas.
When: July 26-31, 2008
Where: McCormick Place, Chicago, Ill.

Dementia Care Conference
This annual event for dementia care professionals features the latest developments in Alzheimer care and support.
When: August 24-27, 2008
Where: Hyatt Regency, Garden Grove, Calif.

In the interest of helping members through Education, the addition of these Agenda Items is requested. We all need to stay current with progress and replace controversy with knowledge.

Robert Lee