Documentary "Planning For Hope"

Here is a preview of the documentary. Go to the link http://soncountry.net/media/hope/ and enter the password: ftd2010

7th International Conference on Frontotemporal Dementias

I attended the conference in Indianapolis this past week. The program was packed from 8am until 5 and then you had an opportunity to mingle with the researchers and doctors working on the genetics of these diseases. Wow, I now realize how little I really know.

So few people know anything about frontotemporal dementia and it remains a mystery to most. It often strikes people in the prime of their life as it did my brother and sister. Families suffer along with the patients due to the lack of diagnosis.

You will be hearing more about FUS a new gene identified in 2009. I first heard about this gene from Dr. Paul Schulz, at the Colorado premier of "Planning For Hope".

Dr. Bernardino Ghetti, President of the FTD 2010 Conference put together an amazing program. There were 22 countries represented at the conference. The next conference will be in 2012 in England.

If you have a family member and are interested in participating in a clinical trial...go to http://www.clinicaltrial.gov/ ClinicalTrials.gov is a registry of federally and privately supported clinical trials conducted in the United States and around the world. ClinicalTrials.gov gives you information about a trial's purpose, who may participate, locations, and phone numbers for more details. This information should be used in conjunction with advice from health care professionals.

I will post more about the genetics later, I am trying to net them out.....and that is really tough.

Vote for our Idea to establish FTD Clinics

Please take less than a minute a day during the month of August to vote for our idea to establish FT Clinics and Educate Medical Professionals about this dreaded disease. We are in the running for a $50,000 grant and we need your help.

All you have to do is go to this website and vote once a day for the entire month of August. Also tell all your friends about it, post it to Facebook, Tweet about it etc.

Here is the link, just click on it, and hit the button on the right that says "vote for this idea":
http://www.refresheverything.com/ftdaactivities

Going Full Time

Beginning August 1, I will be working full time for Frontotemporal Disease Association. It is a Texas based non profit organization dedicated to educating healthcare professionals and raising research dollars for neurodegenerative diseases.

Our first event was in 2009, we had a table at the Mind Science Foundation meeting "Bursts of Creativity with FTD" in San Antonio. Dr. Bruce Miller from University of California in San Franscisco was there. It was a great event.

Our second official event was the premier of the documentary "Planning For Hope" in Colorado Springs with Dr. Paul Schulz and Dr. Sara Qualls as special speakers for the evening. The silent auction was a big success. Dr. Schultz purchased Patsy's SHOWGIRL on canvas for his new office.

Our third event is arranging for Dr. Schulz to participate in the Texas Society of Psychiatric Physicians annual meeting this fall.

Frontotemporal Disease Association off and running

Paul Schulz, MD, Department of Neurology, Baylor College of Medicine is now set to speak in Colorado Springs on May 14th at the premier of the documentary "Planning For Hope".

Dr. Schulz, is also scheduled to speak to the Texas Society of Psychiatric Physicians Annual Scientific Program on November 13th in San Antonio.

It is a great reward to think he will be sharing his wisdom about FTD with medical professionals. Since many sufferers are diagnosed with depression in the early years, the Psychiatric Physicians is a perfect audience.

We have a long way to go, but thanks to this compassionate and caring doctor, we are starting to make a move.

Documentary "Planning For Hope"

The documentary is completed. The premier will be in Colorado Springs, CO on May 14th. Susan and Cindy are planning a Black Tie dinner and showing. Mom, Sarah and I will all be there.

Some incredible families have participated to help make this happen. There are also medical and research professionals providing their insight.

We hope this film makes it to mainstream media so we can educate the general public. Way too many people continue to be misdiagnosed due to lack of information.

Activities

Thanks to a dear friend in San Antonio, Sarah Oxford, Frontotemporal Disease Association has been formed as a non profit. Sarah helped to get the paperword completed and filed with the IRS etc. Sarah has been presented with a wonderful opportunity and will be leaving us.....we wish her the best and thank her for all she has done to help get us going.

I have been running very low tech these past few months. Lots going on personally and professionally......so limited time and brain activity after 7pm.

Keep an eye on www.FTDABrainstorm.org we are under construction, but hope to be up and running soon.