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First EVER World FTD Awareness Week!

First EVER World FTD Awareness Week!

This week is World FTD Awareness Week. There are many events happening around the world, focusing on bringing attention to FTD and working towards a cure! My mom was diagnosed in 2009 and there were very few resources available at that time. It is so nice to see more involvement and discussion around the disease. 

I am going to an event in Washington, DC tonight at the Cleveland Park Bar and Grill from 6-8 PM. It is called "Food for Thought", where we will eat food, and the host will give some form of FTD education. Join my dad and I there if you wish to learn more about FTD, and donate to future research! $10 suggested donation at the door. 

Here's a rundown of the social media kit AFTD has created for this week. There are some interesting facts I didn't even know about. 

  • FTD is the most common dementia for people under 60.
  • Conservatively, there are 50,000 diagnosed in the U.S. alone.
  • FTD presents with dramatic changes in behavior, language, or movement—not memory loss. 
  • ore than half of behavioral variant FTD cases are first misdiagnosed as a psychiatric condition.
  • On average, it takes 3.6 years from onset of symptoms for diagnosis, leaving families in the dark far too long.
  • FTD’s course runs from 2 to more than 20 years. On average, death occurs 8 years from onset of symptoms.
  • FTD is among the forms of dementia targeted by US Congress for a cure by the year


In response: My mother and my grandmother both contracted FTD. My mother was diagnosed when she was 60 (symptoms for 4 years before that), and my grandmother was symptomatic at age 67. At the end of my grandmother's life, she would still recognize family members. My mother may still even now - it's hard to tell, but throughout her illness she did recognize us, and leaned especially on my dad for support as she fell into the disease.  Her memory was not altered as much as her behavior. It took us 2 years to get an appropriate diagnosis in the beginning. In 2007 her M.D. looked at an MRI and did not think anything was wrong, and additionally would not share any information with my Dad, because at that time he was bound to HIPPA - which means her health information was confidential. Unfortunately because her illness prevented her from communicating well, it was difficult for my dad to get information out of her. It was not until 2009 that another M.D. recognized her patterns and offered to do a consultation with both of my parents at the same time. My grandmother died at age 72 (5 years from onset), and my mother is currently 66 years old (going on 10 years since onset). 

Let's hope this push to Congress will result in a cure! There are many many new sources of funding, and research is producing some interesting results already. 



Food for Thought: Dinner (Washington, D.C.)

Tuesday, October 6, 2015, 6:00 p.m. to 8:00 p.m.
Cleveland Park Bar & Grill
3421 Connecticut Ave NW
Washington, D.C. 20008

Jamie Farid will ask diners at the Cleveland Park Bar & Grill for a minimum contribution of $10 donation at the door, with donations benefiting AFTD’s mission.

Food for Thought: The Labyrinth (Riverdale Park, MD)
Wednesday, October 7, 2015
The Church of the Epiphany
1317 G St. NW
Washington, DC 20005
This campaign kicks off on October 7th and has the goal of raising $10,000 for FTD research. Olivia will speak about her experience with FTD, and then invite the participants to walk the labyrinth and donate to support the fundraising goal. The labyrinth is an ancient tool for prayer and walking meditation.
Contact: Olivia Gray at  lonestar8365@gmail.com

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