Our Public Comment At The HHS NAPA Advisory Council MEETING

Hi Everyone! We’re making big moves over here … expanding to be more than just your favorite podcast and really trying to become advocates for FTD by making a public comment to the Federal Government! I took my mom’s story, paired with things I've learned from our interviews and I wrote this public comment that I read at the NAPA Meeting this week. I felt so official and honestly, really proud. Here is my public comment below:

My name is Maria Kent Beers and I am a producer and co-host of a weekly podcast called Remember Me, which focuses on Frontotemporal Degeneration, otherwise known as FTD. 

Remember Me spreads awareness of FTD through the beautiful art of storytelling, and one of the first stories told was my own.

My mother, Amalia had the Primary Progressive Aphasia variant of FTD. She was diagnosed with both FTD and ALS in Boston in 2016, after my family noticed changes in her ability to communicate with us. 

Four years later, in December 2020, she died at the age of 56.

My precious, vibrant mother -- a talented artist with followers from all over the world, a woman who humbly changed the lives of so many, was gone in what felt like a blink of the eye. In the last years of her life she was unable to speak, make art or even communicate in any way what was happening to her -- and there was nothing any of us could do to stop it. 

In the middle of the pandemic, and in the thick of her illness, I created Remember Me podcast with Rachael Martinez, a friend I met online who was going through the same experience - across the country - with her father Frank. 

Over the last 9 months, we have interviewed over 30 FTD caregivers from all over the United States. In each interview we ask the caregiver to tell us about the road to diagnosis, the caregiving experience, and most importantly, to remember and share who their loved one was before FTD. 

Many symptoms and stories are different, however, one part of every story is always the same. When I ask about receiving the FTD diagnosis, without fail, we hear some variation of “The doctor said: They have FTD, there is nothing we can do, Good Luck”

We’ve heard caveats of “I hope you have a lot of money”, “You can come back and check-in, if you want”, “They have 7-10 years to live” or even “You should put them in a nursing home and move on with your life”

Today, I ask you all to imagine this scenario - your loved one is in the prime of their life, and they receive a dementia diagnosis - and the doctor says “There’s nothing we can do, good luck”

Just because FTD has no cure, does not mean we can just give up on care. In those moments of delivering the diagnosis, a doctor can has a choice and they can choose to the time to listen, comfort, and provide insight. 

I always find inspiration in this excerpt from my mother’s art blog, in 2007 she wrote, “Everyone has a light. Everyone has the power and ability to inspire.”

Each medical professional that deals with FTD or related illnesses has the ability to be a light in the darkest moment for a family. Today I ask that you consider what tools and education we can provide so they can be that light.  

Thank you.

Thank you for your continued support, friends. Rachael is preparing a comment for July! GO RACHAEL!! xo Maria