The Tangled Neuron

Early Memory Loss Forum in L.A.

Congratulations to Rich Bozanich and Jay Smith, co-chairs of the Early Memory Loss Forum held in L. A. this past Saturday! The sold-out conference was their brainchild, and as far as I know, was the first to be planned by people with dementia for people with dementia.

I'll post pictures and information from the conference in a few days. In the meantime, you can read Gabrielle Strobel's excellent summary at the Alzheimer Research Forum.

An Alzheimer's Researcher Writes About His Daughter

David Loewenstein, Ph.D., is Professor and Director of Neuropsychology at the University of Miami School of Medicine and Research Director at the Wien Center for Alzheimer’s Disease and Memory Disorders at Mt. Sinai Medical Center. In a previous post, I wrote about his research on cognitive rehabilitation for people with Alzheimer’s.

As part of his job, he writes articles about Alzheimer’s for scientific and medical journals. But he’s also written a book about his special needs daughter, Rachel, who was born four months early. For the Love of Rachel: A Father's Story is written from a personal, rather than a medical, point of view.

Update on Funding for the Byrd Alzheimer's Center and Research Institute

The revised Florida budget, which looks set for approval tomorrow, will cut only $1.5 million of the $15 million in state funding for the Byrd Alzheimer’s Center and Research Institute. Initial proposals for cuts ranged from $7.5 million to the entire $15 million.

Although this is a reprieve for the Institute, it doesn’t mean that state funding is secure in the long run. With the housing market in meltdown here, Florida’s tax revenues are unlikely to grow any time soon. The legislature may be forced to make more cuts.

To ensure continued funding and research, the Byrd Institute, like every other Alzheimer’s research center, must find ways to strengthen its relationship with the community. This means more than just outreach and education. As discussed in a previous post, patients and their families must have more say in how research is prioritized, funded and managed. People with early-stage dementia can understand complex issues, make decisions and give valuable advice. Their family members can also add perspective. Including patients and their families in research decisions won’t be easy, and is unlikely to happen overnight. Alzheimer’s researchers could look at patient involvement in cancer research for ideas on how to move towards this model.

A close relationship with the community will help ensure that scientists are conducting the research that matters most to patients. In return, patients and their families will support that research with advocacy and private donations.

Patty Doherty's Video on Alzheimer's Funding Cuts

My friend and fellow blogger Patty Doherty (The Unforgettable Fund) took care of her father for eleven years. He died just after my father did.

Patty and I have been talking about the proposed cuts in funding for the newly opened Byrd Alzheimer's Center and Research Institute here in Florida. She's posted a video on YouTube with her thoughts. You can comment on her video using YouTube - either in writing, or by uploading a video of your own. Anyone can watch her video, but you'll need to register for a free YouTube account to comment or to upload your own video.

Early Stage Memory Loss Forum in L.A.

I'll be heading out to Los Angeles later this month to attend the Early Memory Loss Forum organized by my friends Rich Bozanich and Jay Smith. Both Rich and Jay have Alzheimer's. As far as I know, this is the first large-scale event organized for people with dementia by people with dementia.

There's a great article (free registration required) in today's LA Times about Rich and Jay's efforts.

To register for the October 27th "Living Our Lives, Planning Our Futures" early memory loss forum, call (323) 900-3180 or go to www.alzla.org/earlystageforum.

Keep Byrd Institute Startup Funding; Encourage Citizen Involvement

My father had dementia. His illness and death made me feel helpless, and left me with a lot of questions. In the two years since Dad died, I’ve been talking with Alzheimer’s researchers, looking for answers.

I’m especially interested in the research in my home state of Florida. An estimated 450,000 Floridians have Alzheimer’s disease, more than any other state except California. And because the population is older, we have a high prevalence of Alzheimer’s here in the Sunshine State. With the large number of Alzheimer’s cases here, what better place for research on prevention and treatment of the disease?

When I went to the grand opening of the new Byrd Alzheimer’s Center and Research Institute here in Tampa Bay a couple of weeks ago, I was pleased to hear about their plans to expand Alzheimer’s research in Florida. In addition to its own research projects, the Byrd Institute provides an infrastructure for collaboration among researchers statewide, as well as administrative services for Florida’s only federally funded Alzheimer’s Disease Research Center. Most of the work will be carried out in the new building, which has lab space, computers for patient databases, and a clinic for seeing patients. The Institute also has employees in Memory Disorder clinics around the state.

State Funding Cuts Threaten Progress

But as I toured the new facility, state budget cuts were announced. The latest proposal would cut funding for the Byrd Institute in half – from $15 million to $7.5 million. Yes, Florida has budget problems, and they’re likely to get worse. But the state’s budget will not drop fifty percent, like the proposed Byrd funding. Maybe this over-sized cut is due to politics and personalities. Or maybe it’s just that cutting funding for a start-up Alzheimer’s research institution is relatively painless. For obvious reasons, people with Alzheimer’s are not active lobbyists, and their families are too busy caring for them to take the time to advocate on their behalf.

Without adequate startup funding from the state, the Byrd Institute’s labs and clinics will sit empty. Private donors are unlikely to write checks to support a vacant building.

Citizen Involvement

Ultimately, this lack of support is part of a larger problem: the disconnect between medical research and patients. Few Floridians know anything about the research going on in labs around the state, and many researchers do not interact with people who have the disease. More citizens affected by the disease should be key players in Alzheimer’s research at the Byrd Institute and other facilities.

Nationwide, there is a trend towards greater patient and consumer participation in research and health care. In some cases, patients and their families now have a say in how research is prioritized, funded and managed. With donations of time and money, they also support that research.

For scientists to find ways to prevent and treat Alzheimer’s, we need this kind of two-way relationship between research facilities and the community. But it takes time to establish this kind of cooperation. Maintaining startup funding levels for the Byrd Institute will give Alzheimer’s patients all over the state increased opportunities to work with researchers, participate in clinical trials and receive treatments based on the latest science. This should increase Floridians’ direct support of Alzheimer’s research, and over time, lessen the Institute’s reliance on state funding. More than 17 million people live in Florida. If each of them eventually donated just one dollar per year, there would be no need for the state to allocate startup funding.

What You Can Do

If you live in Florida, please call, write or email your legislators and let them know you oppose funding cuts for the Byrd Institute. Give the Institute time to recruit researchers and doctors and work with the community before startup funding is cut off. If $15 million dollars sounds like a lot of money, consider the $155 million the state allocated last year to bring the Burnham Institute for Medical Research to Orlando, or the $310 million of state funds spent to create Scripps Florida.

Then find the Alzheimer’s research facility nearest you, and ask for a schedule of events. Learn more about the work they’re doing, and make sure you meet their scientists. Contribute what you can. Chances are their work will benefit someone you love.