Our Mission

* Educate healthcare professionals

* Establish a clinic for FTD sufferers

* Support research

Friday, January 30, 2009

Frontotemporal Dementia FTD

Taken from "The Tangled Neuron"

The term frontotemporal dementia (FTD) refers to a group of degenerative brain conditions that affect the frontal and temporal lobes of the brain.

Scientists have observed abnormalities in a protein called tau in the brains of some people with FTD. The protein forms into tangles (also found in Alzheimer’s) that scientists think harm neurons. In Pick’s disease, one type of FTD, abnormal cells called Pick’s bodies are also found in the brain.

FTD can cause memory loss, speech problems and changes in personality and social behavior. Symptoms may also include problems with balance or walking. Some diagnosed with FTD experience enhanced creativity.

Researchers do not know what causes FTD, and there are no treatments to stop or slow the disease progression. Drugs typically prescribed for other types of memory loss, such as cholinesterase inhibitors and certain antipsychotic drugs, may not be appropriate for people with FTD.

Monday, January 26, 2009

Donate to Further Research in FTD

You can donate directly to Baylor College of Medicine - Department of Neurology

To donate, make checks payable to:

Mr. Keith Davis
Department of Neurology
N-302One Baylor Plaza
Houston, Tx 77030

You can call him with any questions. Be sure to put cover letter stating that you want the donation to go to Dept of Neurology for FTD Research.

We have a long way to go.....so please tell your friends and family, instead of flowers when your loved one is ill, donate money for research.

Sunday, January 25, 2009

Doctors that Care

The doctors at Baylor College of Medicine in Houston Texas are INCREDIBLE.

We experienced years of doctors telling us we were wrong and nothing serious was going on with my sister and brother. Sometimes doctors got angry because we were telling them our suspicions about what was going on with Michael and Patsy. Battle after battle, you start questioning yourself.

After finding BCM, we were able to stabilize my sister's medications. The fight wasn't over though. We didn't live in Houston, so the doctors where we lived would change Patsy's medications because they thought they knew more than the doctors at BCM Neurology Department. And the local doctors knew NOTHING of FTD until we told them about it.

If you have a loved one and you aren't getting the help you need and you can get to Houston. Go to see Dr. Paul Schulz and his team. This is a teaching hospital, so they want answers. This is a caring group of Neuro Professionals.

I worry when I hear stories where someone is talking about their daughter, husband, son etc and say..."well he is just going through a rough patch" or "maybe he/she is depressed" or "maybe he/she had a stroke" or "I don't understand his/her behaviors" or "could he/she be Bipolar" ... run don't walk to a Neurologist and have them tested. Get a PET scan if you can. I have learned it is even better than the SPECT or MRI.

Seems like when the brain malfunctions, we are afraid. We shy away of diagnosis. Why is that?

Thursday, January 15, 2009

Meetings at Baylor College of Medicine

We toured Baylor College of Medicine's Research Laboratory where they are actively seeking answers for FTD. Incredible people doing incredible work.

Also heard brief presentations from the Researchers, outlining what they are working on. These people are not just Researchers, they are compassionate people wanting desperately to find answers. Realizing they are on the forefront of this disease, they understand there remains much to do.

I want to thank Dr. Paul Schulz, Neurologist, Dr. Michelle York, Neuropsychologist, Dr. Qureshi, Neuropsychiatry, Dr. Lai, Director of Parkinson’s Center, and Linda Richardson, Founder of ALS Houston Chapter and Clinic. There are many more to thank….the researchers, but I don’t know them all by name.

Dr. Schulz was my sister's doctor. Dr. Schulz and his team helped our family understand what was happening as the FTD progressed. Had it not been for BCM and these caring doctors, my sister could have passed away before we knew what was going on. They helped us to understand why she behaved like she did.

When the brain is involved, we tend to shy away from what is going on...you can't see it, surely drugs can help?? ...this family knows all the scenarios.

We need to help them raise money to start FTD Clinics...a great concept to help patients and families dealing with this dreaded disease.

FTD description

FTD is a form of dementia, or altered mental status, which is distinct from the cognitive and memory problems evident in Alzheimer’s disease.

FTD involves a change in personality that can produce obsessive behavior, loss of the ability to plan or make decisions, and other more subtle signs that something is amiss in the cerebral cortex.

Frontotemporal refers to the forward part of the brain that sits above the eyes and behind the temples. It is the last region of the cerebral cortex to mature, which explains why teens often cannot make good “adult” decisions. Lowering of the function of this region can lead to impulsive and emotional behavior.

Thursday, January 1, 2009

2009 Goals

Educate healthcare providers about Frontotemporal Dementia

Inspire organizations, corporations, and individuals to donate money and resources for research and education of Frontotemporal Dementia

Listen and provide a ear to those caregivers in need of a friend that understands what they are going through