Sunday, April 29, 2007

forMemory: Building Hope in Early Onset Alzheimer's Disease


People with Early Onset Alzheimer’s Disease (EOAD) have played an important part in solving the mysteries behind Alzheimer’s disease. Families with EOAD contributed to early genetic studies because the disease pattern, unfortunately, was seen in multiple generations. We who are affected by EOAD want to continue to be a major participant in seeking and finding ways of curing and preventing EOAD symptoms. Early Onset has the most profound impact both on families and society by challenging young families physically, mentally and emotionally. Not only stressing financial futures but often striking before there is even a chance for financial security.

MISSION
The mission of forMemory: Building Hope in Early Onset Alzheimer’s Disease
is to bring together those of us affected by EOAD, to increase our emotional, spiritual, and physical being through actively and aggressively seeking and finding ways of curing and preventing EOAD symptoms.

GOALS
Replace Aloneness with Hope
We are not alone. We want to share our emotional support. When one needs that extra something to make it through the day, we want to be able to say “Call me. I will listen. I understand”.

Replace Fear with Knowledge
It takes seeing the whole picture and we each are holding the different parts. With earlier probable diagnosis more of us are still able to communicate. If each one shares the ideas that are working, perhaps the whole picture will come together and our children and grandchildren, brothers and sisters, will not have to face these diseases. It is as simple as "I feel better when..." There is so much learned and so much more to learn. By sharing we distribute the task.

Replace Disease with Life
Aggressively seek new information. Look outside the box. Look at the total person - mind, body, and spirit. In using all there is for us, our quality of life will be higher. Remember the “Nun Study”. There is so much to be researched. There are so many more avenues to pursue. We can open our minds to healing. This is not just a time for waiting and hoping that “they” will find the cure. It is a time to actively learn, seek, compare and research. It is a time for partnering with doctors and researchers.

Replace Silence with a United Voice
Speak out in a united voice. One small voice may be drowned out by all that is out there. By speaking together we will be heard. We who physically, mentally, and spiritually feel the effects of disease can have the strongest voices…for those who no longer can speak. Perhaps by sharing, it will help keep one more family intact.
PLANS
Communicate
Maintain an informational web site and blog for communication. The web site also shares the information we find on Early Onset Alzheimer’s Disease with others who are affected by other types of dementia so they may also benefit.

Meet Regularly
Our immediate needs are to be able to meet regularly, either in retreat settings or at informational conferences. By coming together we are not only able to strengthen our spirits but add to our individual knowledge. We have always found educational conferences to provide new information on dementia and an increased level of hope. By setting up display booths when available, we are able to share information on forMemory providing an awareness of Early Onset AD. Through the sale of items we raise funds to help offset lodging, travel expenses, and conference fees for all the families attending.

Work with Pro-active Doctors
As the opportunities arise we work as a group with pro-active doctors to coordinate an informal time shared. These doctors have been very supportive in “looking outside the box” especially for Early Onset AD.

Documentation
In order to give back to society, another of our projects is to document and compile our earliest symptoms which include not only mental and emotional but also physical symptoms such as numbness, changes in sight perception, dizziness, vertigo, etc. And then what makes us better and what makes us worse. We will be discussing environmental, nutritional, stress, integrative ways, etc.
Later Plans include making available genetic testing for those who desire it.

forMemory members will continue to be leaders in the search for finding ways of curing and preventing EOAD symptoms.
We are asking you for help. We cannot attain these goals without your support. It is collaborative efforts that have the power to adequately address Early Onset Alzheimer’s Disease. We hope this is one step toward those united efforts.

Special thoughts from very hopeful families.

forMemory is a nonprofit 501c3 educational organization

2 comments:

Mandelina said...

Good words.

Alzheimer Clinic said...

Alzheimer’s disease is devastating for both the patient and his or her loved ones. It can be especially difficult for the primary caretaker, so it is important to have a network of family and friends to lend a hand.

Alzheimer Clinic