A New Thing is Happening...

And then a  wonderful thing happened!

Persons with or affected by Alzheimer’s and Related Disease were asked to attend the Alzheimer’s Association Public Policy Forum in Washington DC in May 2006 to talk with congress.  Finding each other and gathering on our own to share some time with our peers, we no longer felt alone and isolated - we were normal people with a shared disease, sharing the same goal - quality of life.

 “Being together was the most normal I had felt since AD”, spoken by an attendee who was also asked to be a member on the National Alzheimer’s Association Advisory Board. 

Through the summer contact by emails and telephone we began to improve our quality of life. No longer did we feel alone and helpless. And by fall we knew “we had to do more!”

First, we could not loose the connections we had made. Next, we knew there were many others to be found.  And most importantly, by talking we realized that each person is holding parts of the puzzle toward quality of life while aggressively reaching for a cure for Alzheimer’s Disease. Early Onset Disease has the most profound impact both on families and society by challenging young families physically, mentally and emotionally. forMemory: Building Hope in Early Onset Alzheimer’s and Related Disease was formed from our combined energies in fall of 2006.

By sharing “what makes us feel better” and “what makes us feel worse” we realized that it is not so important what we do, but  the fact that we are doing something to aggressively fight EOA and Related Disease. Each person is unique, so the regimen is a little different for each.

 “We are a strong group. I can physically feel the energy as I talk with each person across the miles. To think of all that energy under one roof - our hotel will be glowing!” stated co-founder, and hosting family as plans were formed to hold our first annual conference in May 2007.  “I cherish the time we spent together. It seems that I have lost so many friends from before AD - it is hard for them  - and yet, you only know the “me” that I am now. You don’t see a loss, only a “who I am” and that is important to me to feel whole. We laugh so hard.  I have not felt that in so long.”

forMemory held it’s 1st annual national conference in Madison, WI May 2007. Along with renewing our friendships and meeting new faces, we set our mission, goals, and plans.

Knowing that we needed “right brain”  creativity we cast hand molds and had a lesson in yoga along with our information sharing, including “what is working and what is not working” in stress reduction, medications, supplements, nutrition and integrative regimens, adding in lots of laughter and song. forMemory coordinated informal time to share with doctors and researchers who are supportive in “looking outside the box” especially for Early Onset Disease. Knowledge replaces fear, and with that comes increased hope.

 We planned our conference to be held two days before the WI State Alzheimer’s Assoc. 21st Conference so we could also attend. We appreciated the support and warm welcome we received there. “We have always found the state conference to provide new information on dementia and an increased level of hope.” By attending the state conference programs, forMemory members had an opportunity to gather information on the latest research and talk with Dr. Tanzi who was a principal in finding genetic connections which is a strong focus for many of us. forMemory also hosted a booth in the exhibit area where we handed out information on Early Onset Disease and “sold our wares” in order to raise funds to offset the cost of the getting together and future plans. Ending the days events, the public was invited to a Birthday Celebration Reception.  “A celebration of the start of something important!” Through family displays, members also shared family history,  what is important in our lives and our achievements, helping to put faces behind the disease.

 In forming an educational  501c3 organization it is our hope to raise funds and attain the goals necessary to help keep one more family intact. As if to validate our decision the following vision was posted in July 2007 by Alzforum.org who has just added a special section of their website to provide resources for all who share an intense interest in familial early-onset AD (eFAD).

 “A growing number of scientists acknowledge that early-onset familial Alzheimer’s Disease (eFAD) patients are not only underserved but could also have yet more to contribute if only the field could come together.  If families with eFAD and their doctors organized themselves into a network to share valuable information for clinical studies of biomarkers, they could possibly help themselves, and in so doing help the millions of Alzheimer disease patients at large. “ Gabrielle Strobel, Alzheimer Research Forum - www.Alzforum.org/eFAD.

 It is our families actively fighting early onset disease who can not only give help to understand what is going on to other families, but also help the researchers and doctors know what directions they should be pursuing. We know the earliest symptoms, we know “what makes us feel better” and “what makes us feel worse.”