During the meeting in Miami discussed in the AFTD newsletter, they mention two proposals, having a national patient registry and a national data base. I think both of these are key projects that will spread information about FTD to those who need it. The database hopefully will be ready for piloting in Fall 2010.
I agree with the steps for AFTD strategic planning. I hope that they will have enough support staff and volunteers to educate the medical community on a widespread basis about FTD. Perhaps there will be some doctors/nurse practitioners/physician’s assistants that are willing and eager to learn about FTD? I went to a Woodstock Sim on Second Life that was up above the clouds. Maybe that is where my head is right now. Most neurologists do not know anything about FTD and even some FTD specialists do not understand that there is a wide variance of symptoms in FTD patients and patients often have other related neurodengenerative disorders in addition to FTD.
Dr. Boeve was involved in the Miami meeting mentioned in the FTD newsletter. My FTD doctor is Argye Hillis. When I spoke to her earlier in the month, she told me that she, Dr. Boeve and other FTD specialists met at last year’s May meeting in Ft. Worth, Texas for FTD caregivers. They are making plans to form a group of FTD specialists who will meet together on a regular basis to exchange information and standardize practices of testing and treating people with FTD. Dr. Boeve and some of these plans are mentioned in the newsletter.
There is another caregiver’s conference in May at Ft. Worth. Several of us have been talking about the need for FTD sufferers who are still able to communicate and have insight into their disease to have a discussion or panel at these conferences for FTD. We are very grateful for the support that these conferences provide our loved ones. We as FTD patients would also like to be included into these activities not only for our own well-being but to provide information to caregivers from the aspect of a person with FTD.
Myself and others I know with FTD are looking into being able to speak at the International conference. I encourage as many people with FTD who are able to attend these conferences and let people in the medical community and caregivers know that some of us with FTD have much insight into our disease and are willing to share. If anyone can help us in our endeavors to speak as FTD patients at seminars, conventions or web based activities please contact me.
Susan Grant will be having a get together in Colorado in May to celebrate the finish of her film Planning for Hope. I don’t have the details on hand but I will provide them later.
Going back to the FTD Newsletter, Dr. Mackenzie’s statement that virtually all pathological forms of FTD can now be assigned to one of three major molecular categories is good progress towards unlocking the keys of the nature of the beast.
The genome study is exciting news for people who have FTD that runs in their families. I know a few people who have heredity based FTD. It is bad enough to have one member of a family have FTD but even worse when multiple members have FTD. Instead of multiple family members bringing some clarity and connection with a family it often leads to even more denial and disharmony. Siblings or parents of someone who have FTD that also have FTD are often in denial about their own illness ( a common symptom of FTD) and this makes it that much harder for the person with FTD who understands about the disease to make progress towards understanding and unity.
There has been exciting news about the drug Davunetide owned by Allon Therapeutics. Early clinical trials show promise in treating FTD.
Frontier Dementia Research Group is doing research in frontotemporal dementia. See this website for information about their studies and publications. They also have caregiver centered studies, carer support and research study information.
That’s all for now. I will continue to let you know more as I receive updates.
May there be peace that guides the planets and love that steers the stars ………..