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.
Tuesday, June 29, 2010
Sunday, May 9, 2010
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.
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.
Friday, May 7, 2010
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.
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.
Saturday, April 24, 2010
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.
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.
Sunday, November 1, 2009
Frontotemporal Disease Association
Still waiting for the documents from the State of Texas approving our non-profit status. Sarah called and they said documents are in process and we should receive them soon.
We are laying out the management and leadership roles. We are hoping all our friends and relatives will want to participate in some form or fashion.
We are looking for an organization or corporation to provide us with office space. Sarah is working on stationary and cards.
It is exciting to be on the ground floor of education effort of this magnitude. It is time to move forward on this initiative.
We are laying out the management and leadership roles. We are hoping all our friends and relatives will want to participate in some form or fashion.
We are looking for an organization or corporation to provide us with office space. Sarah is working on stationary and cards.
It is exciting to be on the ground floor of education effort of this magnitude. It is time to move forward on this initiative.
Monday, October 19, 2009
Susan, a Hero Among Us, Fights FTD
When I was first contacted by Susan, I couldn't believe I was talking with a woman living with FTD. Our first conversation was in December of 2008 and I was overwhelmed by her strength and humor.
After what we went through just getting a diagnosis for my brother and sister, I couldn't believe my ears. Could this woman really have the same disease which robbed my brother and sister of their smiles and passion for life?
Susan is funny, smart, and definitely a fighter. She shares her story with doctor after doctor. She was lucky to find a doctor willing to work closely with Susan and develop a large cocktail of drugs which help navigate Susan through her days. Before Susan, I really didn’t see any hope. This disease masquerades as many other diseases in the early years, it is tough to diagnose. I have spoken with so many family members dealing with loved ones suffering with FTD and devastation is always a word used when discussing the disease.
Because of Susan, I see there is hope, lots of hope. Susan is smart, she is a fighter, and she is taking this disease to the mat.
Susan and Cindy continue to work long hours as they approach the completion of the documentary “Planning For Hope”. Most of us will never know the challenges Susan faces daily, and she hopes we don’t…..but if we do, she is leading the way to a better journey.
http://www.ftdtheotherdementia.com/index.html is the website set up to raise additional money for the completion and distribution of the documentary. Every dollar can make a difference, so if you can, please donate.
Susan has been fighting another battle recently, bronchitis. Since her immune system is weaker, she is having a tough time. I am sending lots of prayers your way Susan.
After what we went through just getting a diagnosis for my brother and sister, I couldn't believe my ears. Could this woman really have the same disease which robbed my brother and sister of their smiles and passion for life?
Susan is funny, smart, and definitely a fighter. She shares her story with doctor after doctor. She was lucky to find a doctor willing to work closely with Susan and develop a large cocktail of drugs which help navigate Susan through her days. Before Susan, I really didn’t see any hope. This disease masquerades as many other diseases in the early years, it is tough to diagnose. I have spoken with so many family members dealing with loved ones suffering with FTD and devastation is always a word used when discussing the disease.
Because of Susan, I see there is hope, lots of hope. Susan is smart, she is a fighter, and she is taking this disease to the mat.
Susan and Cindy continue to work long hours as they approach the completion of the documentary “Planning For Hope”. Most of us will never know the challenges Susan faces daily, and she hopes we don’t…..but if we do, she is leading the way to a better journey.
http://www.ftdtheotherdementia.com/index.html is the website set up to raise additional money for the completion and distribution of the documentary. Every dollar can make a difference, so if you can, please donate.
Susan has been fighting another battle recently, bronchitis. Since her immune system is weaker, she is having a tough time. I am sending lots of prayers your way Susan.
Thursday, September 10, 2009
In Honor or Dennis McGrury
My friend Jean has been thoughtfully loving and caring for her husband Dennis as he dealt with FTD. Dennis has left this world and I know this is sad for Jean, he was her soulmate.
When I read her plans for his celebration, I couldn't stop crying. I have never met Jean or Dennis, but feel a connection I can't explain.
I hate this disease, it is so unfair, so cruel, and so hard on families. I pray every night, this disease will disappear so that no more families have to feel the sadness.
Love you Jean.
Terri
When I read her plans for his celebration, I couldn't stop crying. I have never met Jean or Dennis, but feel a connection I can't explain.
I hate this disease, it is so unfair, so cruel, and so hard on families. I pray every night, this disease will disappear so that no more families have to feel the sadness.
Love you Jean.
Terri
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