Did You Know...
Here in the United States, 80% of those living with a disease causing dementia such as Alzheimer’s, Frontotemporal Degeneration (FTD) or Lewy Body Disease (LBD) are taken care of at home. Spouse or adult child turned caregiver overnight, the average age is 49 years old and they spend an average of 9 hours a day, 7 days a week fulfilling caretaking tasks. Imagine being sent home with a life altering diagnosis, without any guidance and on your own to discover, understand and cope with what is happening to your loved one. The diagnosis is terminal and it is on your shoulders to figure out how to care for them.
Hi, my name is Betsy, founder of For Their Thoughts Foundation (FTTF). I was 22 and blissfully unaware of the complexity of dementia when Mom, at 56 years young, was diagnosed with FTD.
Diagnosis was via a letter in the mail and in that moment our lives changed forever. I’ll never forget gripping that single page, the sinking feeling in the pit of my stomach and wondering - now what? FTD is terminal. It says right here. And yet all I have is a one paragraph letter stating the problem and no solution, no offer to help, no references...A simple letter when dementia is anything but simple...
That was in 2008. My family and I cared for Mom the best we could while she fought for 5 years, and in 2013 she took her last breath.
I left Pittsburgh and moved to California. I tried to move on but I could never fully shake the reality that there were still MILLIONS of families going through what my family went through; helpless and unsure where to turn.
With the help of family and friends, I began hosting small awareness campaigns...Penny For Their Thoughts..Running for Their Thoughts...people kept joining, sharing their story and their support and reminding me that there was still an unmet need for millions.
And then in 2020, a crazy notion was put into motion. Literally. We began trialing the 35 day "Move For Their Thoughts (MoveFTT) challenge with 20 friends while we dove into lawyer and business start up needs to make For Their Thoughts campaign into For Their Thoughts Foundation. Late nights commenced of website development, program development and understanding how best to make the right impact for these families.
YOUR FOOTPRINT: It is your encouragement and support that got us here. And now, a little over a year later, we’ve moved over 3,500 miles in four (4) MoveFTT challenges, helped a family in Kentucky, launched our "reTHINK dementia" initiative, and most importantly, raised enough funds to launch our first year of "Care for the Caregivers Relief Program - providing respite and relief grants for eight more family caregivers this year!
We thank all of you for your participation in MoveFTT, reading this newsletter, following us on social media, telling friends, sharing your personal stories with dementia... you have become part of the FTTF Family and Footprint and we look forward to growing this organization, expanding our footprint and prove to all of you your support was worth it and makes a difference in the lives of many while they go through what may be the hardest time in their life.
A LOOK BACK
FTD AWARENESS WEEK - Impact and ReCap
September 26 through October 3rd: The energy was real and tangible. And it wasn't just nationwide. It was WORLDWIDE. Through the eyes of those impacted, here are the stories of loss, love and hope coming together as one voice.
For a full week, noses crinkled across the U.S. in anticipation of their shot of hot sauce in honor of their loved one diagnosed with Frontotemporal Degeneration (FTD).
The message was clear: "You are not alone" and it echoed from home to home as researchers, families and advocates united.
Families, friends and organizations shared frustrations in the long diagnosis period (over 3 years for most); sadness from the grief gripping their hearts while; exhaustion from balancing work, childcare and now "spouse/parent care and most importantly the DESIRE for the public to understand.
This week, their voices were heard:
The New York Times published a full page ad on Sept 22nd.
The Voice contestant, Parker McKay delivered an emotional performance and opened up about her family’s FTD journey.
Nonprofits, for profits, families from all countries, backgrounds and walks of earth came together and became ONE VOICE, ONE GOAL, ONE COMMUNITY.
FTD hard facts in numbers:
40-60 = the average age range of diagnosis.
FTD is the most common form of dementia under the age of 60, resulting in physical and mental decline in the prime of your life.
“It turns children and young adults into caregivers.” --Association of Frontotemporal Dementia
3.6 = Average number a years to diagnose
Due to common misdiagnosis and lack of understanding amongst non-specialized medical professionals, families go through an average of 3.5 years of testing and waiting before a diagnosis is made, their world is turned upside down and sent home without resources or direction of what to do with this life altering news.
4-5 = known subtypes of FTD
FTD has at least four (4) subtypes impacting behavior, communication and/or movement. For some, there is a connection between FTD and amyotrophic lateral sclerosis (ALS). Regardless of subtype, they all result in brain degeneration and fatality.
0 = Cure or treatment options
FTD Hopeful Facts:
Over 80 research studies addressing FTD from different angles: the various subtypes, causes, treatments and prevention.
Research brings not just treatments but lessons learned and methods to improve the quality of life for our loved ones diagnosed TODAY with FTD or similar dementias.
Unity in Action
In 2008, there were not even clinical trials or experimental options for someone living with FTD. Now, only 13 years later and research has propelled from theory to laboratory to clinical trials thanks to the work ethic and determination of organizations such as The Bluefield Project and their consortium approach of collaboration with the entire research industry to move science forward and Association of FTD bringing the community together for action.
Unity in Community: For Their Thoughts Foundation proudly joined the FTD HotShotChallenge, shared stories and passed proceeds on to AFTD and their research programs. We became one with the community and we hope you all mark your calendars and join us next September for FTD Awareness Week.
"My family has a genetic form of FTD and I have spent YEARS going through all of the emotions - fear, sadness, uncertainty of the future, isolation. But this community and progress has helped to replace those feelings with new emotions: HOPE, new purpose, drive to live everyday and give back. I can't bring my mom back, but I will never stop being her voice for future generations."
- -Betsy Hall
World Wide FTD Stories Told
Stories Told on Social Media
Watch Now: 100s of stories from all around the world. Click on any minute, and hear from the caregivers and persons with FTD.
A few highlights:
Minute 10 - Meet Susan Dickinson’s - AFTD CEO’s - “The biggest impact is the isolation...the most important management strategy is creating a community”
Minute 13:42 - Meet diagnosed, Steve - "I have the behavioral variant...and struggle how to tell my grandkids. I had the sense to do 2 things right (1) marry my wife and (2) buy long term care insurance policy.”
Minute 50 - Meet Daughter/Caregiver Julie - "I lost my mom to a genetic form of FTD/ALS. But I have HOPE! Hope for a genetic cure!"
Minute 2hrs 5 min - Meet Wife/Caregiver Jenny - “In the long term..I just want Stephan’s journey to be... humane."
Simply by taking the time to understand you are already taking steps to support the dementia community. FTTF Social Media aims to foster this community of caring, advocacy and prevention through inspirational, honest and informative content. From Caregiver Hacks and Teaser Tuesday riddles to dementia education and inspirational stories, like Jillian and her mom. Follow us today and see what you missed during FTD awareness week.
A LOOK FORWARD
Returning for Round 5! Move For Their Thoughts (MoveFTT). We are excited to continue moving around the world as one in the"Mile a Day" 35 Day Challenge:
Join from wherever you are. This is the only challenge where you can earn $ back through participation.
New! Care For Their Thoughts (CareFTT) Benefit near Oceanside, CA.
Live Music, ticket raffles and a great evening for a great cause.
Dates and Registration will be announced by December 2021.
Proceeds will go toward our Care For the Caregivers Relief Program: A grant to "Point the Way and Offering a Helping Hand" to families caring for their loved one with dementia.
30 Minutes on Spotify and Apple
World FTD Awareness Week Special Episode
"They sent us home...The doctor said there's nothing we can do so no point in coming back..."
Gain insight on FTD and early signs; hear from the families, diagnosed and experts, who our loved ones were before the disease. This week's episode is a compilation of episodes told from the perspective of children, spouses and siblings... documenting the first recognition of "something is wrong" and the journey with the FTD diagnosis.