FTD In The Arts 2024
In 2024 AFTD introduced FTD In The Arts as a new addition to the Annual Education Conference. These were the entries received. From captivating performances to insightful paintings, this exhibit unveils the profound impact of art by care partners, persons diagnosed, and loved ones affected by this disease. Click on the titles to learn more about the artist and their work.
My Life with BVFTD
David Albright, IL
My Life with bvFTD, 2013
Pencil, Marker
Born in 1952 in Celina, OH, Dave followed a career in the Navy. In 1975 he moved to Illinois where he met his wife, Robin. When they married four years later he promised her their life would never be boring. Despite their humble careers, everyone knew they were abundantly happy.
In 2012, the Albright family’s happy life was turned upside down. Dave began exhibiting unusual behavior, leading to a series of inaccurate diagnoses until a neurologist was able to reveal the heartbreaking truth: Dave had FTD. Their journey was arduous, marked with bankruptcy and relying on food stamps. Finally, Dave and Robin were able to secure some support they needed.
When David was first diagnosed, Robin asked him what it was like to have bvFTD. He sat down and drew this image. Dave explained that it’s like having a conversation with someone and right in the middle things go missing, much like reading a book with a page that’s fallen out.
This Little Light of Mine
VJ Anastasia, RI
This Little Light of Mine, 2016
Acrylic, Glitter
VJ Anastasia, a beloved wife, mother and friend of many had to leave her job as an accountant in 2012 at age 56 due to cognitive issues that eventually led to a diagnosis of FTD in 2013. VJ loved music and sang in a church choir for many years. She lived out the remainder of her life with grace and dignity and was dedicated to helping others. She participated in multiple research studies during the course of her illness, was featured in a 2017 awareness video produced by the AFTD, and consented to donate her brain for FTD research. VJ's journey with FTD ended in 2019, but her epitaph says, "My life goes on in endless song, How can I keep from singing?"
This Little Light of Mine was produced when VJ was a participant in the Opening Minds Through Art program in day care at St. Elizabeth’s memory center. The occupational therapy intern who helped VJ with this painting wrote, “She started singing This Little Light of Mine because someone didn’t know the tune. Everyone started singing along with her.”
The Unpatterning
Catherine Beier, CA
The Unpatterning, 2021
Needlepoint
Catherine met Thaddeus Beier on her first day of college at Johns Hopkins in 1982. They have been married for forty years and have two adult children. Thad was diagnosed with svFTD in 2019 and now has been in locked memory care for a year. Catherine created this piece in his honor during his 2021 workup at UCSF for the ALLFTD study, to represent visually the implosion of her beloved husband’s intellect and personality under the onslaught of his relentless disease. The finished piece was gifted to the Memory and Aging Center at UCSF.
The patterns on the left represent intact cognitive processes before dementia. On the “y” axis are the things he was always gifted at, toward the top, and the things that were never his jam at the bottom. The “x” axis is time. The gifted parts of his mind held out a little longer, but first the macro patterns are distorted and give way, then the colors start to transpose, stitches start to wander and get coarse, colors get garbled and this whole other thing (brown) gradually takes over. Brown is what he’s looking at when he’s staring into space. Toward the right it’s mostly a mess, with the occasional lucid thought bubbling up, and also the canvas showing through in spots where his physical health is just beginning to fail. My initials and the date are faded and in the lower right corner. This is what it looks like to me so far.
Shield of Strength
Bradley Bishop, MN
Shield of Strength, 2018
Digital Drawing
Bradley was diagnosed with bvFTD at 24 years old. In his cognitive decline, he became non verbal and needed total care. In 2018, he created this artwork using an app on his iPad. Bradley died on 2/6/2023.
Irish Landscape
Barbara Bonaventura, NY
Irish Landscape, 2002
Watercolor on Paper
Barbara Bonaventura has spent her entire adult life painting, drawing and teaching. She is 96 years old and still drawing.
Barbara Bonaventura received a BFA in 1952 and a master’s in art education from CUNY. She taught in the Long Island public school system for almost twenty years and was also a very active community member in her hometown of East Hampton, NY. Barbara served as the Friends of Guild Hall President in East Hampton and was an active member of the Choral Society of the Hamptons and the East End Artist Alliance.
In addition, Barbara is the mother of eight children, the youngest is Elizabeth Bonaventura. Elizabeth is also an artist; she was diagnosed in 2018 with FTD. Barbara and Elizabeth remain very close, along with Barbara’s other two daughters, Janice Simon, a regional Director of Nursing for Assisted Living facilities, and Lorraine Bonaventura, an architect. Barbara also has five sons living along the East Coast in Westchester, NY, Mass., New Jersey, Georgia, and South Carolina. She has twelve grandchildren and seven great-grandchildren.
Man and Young Boy in Landscape
Elizabeth Bonaventura, NY
Man and Young Boy in Landscape, 2016
Casein Paint on Wood
Elizabeth Bonaventura has been painting professionally for the last 25 years. In the fall of 2023, Elizabeth Bonaventura had a solo exhibition at the Gallery at Heimbold, Sarah Lawrence College, entitled "If we change the way we look at things, do the things we look at change? The Heimbold collection spans almost 25 years of art making, featuring pieces from 1995-2019.
She has been included in shows at Schroeder Romero & Shredder Gallery, NY; Kinkead Contemporary, Los Angeles; Soloway Gallery, Brooklyn, NY; and 106 Green Gallery, Brooklyn. In 2018, she was awarded a MacDowell Artists Fellowship, a renowned Artists residency program in New Hampshire founded in 1907. During the MacDowell Summer Residency Program 2018, she completed 13 drawings in Casein Paint and 26 in her sketchbook. The Santa Barbara Museum of Art acquired work from her 2019 solo exhibit at the Soloway Gallery.
Elizabeth graduated from the Moore College of Art and Design in Philadelphia in the 1980s before attending the Mason Gross School of the Arts graduate program at Rutgers University, where she received the Outstanding Graduate Student Award at Rutgers University in 1999. Elizabeth received the New York Foundations Fellowship Award in Painting in 2012.
In addition to her painting career, Elizabeth worked in film and television as a scenic charge from 1996 through 2017 on a range of projects, including Eat, Pray, Love, Boardwalk Empire, Eternal Sunshine of the Spotless Mind and Limitless, among many other films and series.
Elizabeth was born in 1964 and raised in Long Island, NY. She lived in Brooklyn and the Catskills before moving to Glen Cove, NY. She is the youngest of eight children. After her FTD diagnosis, she has continued to paint and draw.
Middle Bird and Two Evil Men
Elizabeth Bonaventura, NY
Middle Bird and Two Evil Men, 2018
Casein Paint on Paper
Elizabeth Bonaventura has been painting professionally for the last 25 years. In the fall of 2023, Elizabeth Bonaventura had a solo exhibition at the Gallery at Heimbold, Sarah Lawrence College, entitled "If we change the way we look at things, do the things we look at change? The Heimbold collection spans almost 25 years of art making, featuring pieces from 1995-2019.
She has been included in shows at Schroeder Romero & Shredder Gallery, NY; Kinkead Contemporary, Los Angeles; Soloway Gallery, Brooklyn, NY; and 106 Green Gallery, Brooklyn. In 2018, she was awarded a MacDowell Artists Fellowship, a renowned Artists residency program in New Hampshire founded in 1907. During the MacDowell Summer Residency Program 2018, she completed 13 drawings in Casein Paint and 26 in her sketchbook. The Santa Barbara Museum of Art acquired work from her 2019 solo exhibit at the Soloway Gallery.
Elizabeth graduated from the Moore College of Art and Design in Philadelphia in the 1980s before attending the Mason Gross School of the Arts graduate program at Rutgers University, where she received the Outstanding Graduate Student Award at Rutgers University in 1999. Elizabeth received the New York Foundations Fellowship Award in Painting in 2012.
In addition to her painting career, Elizabeth worked in film and television as a scenic charge from 1996 through 2017 on a range of projects, including Eat, Pray, Love, Boardwalk Empire, Eternal Sunshine of the Spotless Mind and Limitless, among many other films and series.
Elizabeth was born in 1964 and raised in Long Island, NY. She lived in Brooklyn and the Catskills before moving to Glen Cove, NY. She is the youngest of eight children. After her FTD diagnosis, she has continued to paint and draw.
Motel
Elizabeth Bonaventura, NY
Motel, 2016
Casein Paint and Graphite on Paper
Elizabeth Bonaventura has been painting professionally for the last 25 years. In the fall of 2023, Elizabeth Bonaventura had a solo exhibition at the Gallery at Heimbold, Sarah Lawrence College, entitled "If we change the way we look at things, do the things we look at change? The Heimbold collection spans almost 25 years of art making, featuring pieces from 1995-2019.
She has been included in shows at Schroeder Romero & Shredder Gallery, NY; Kinkead Contemporary, Los Angeles; Soloway Gallery, Brooklyn, NY; and 106 Green Gallery, Brooklyn. In 2018, she was awarded a MacDowell Artists Fellowship, a renowned Artists residency program in New Hampshire founded in 1907. During the MacDowell Summer Residency Program 2018, she completed 13 drawings in Casein Paint and 26 in her sketchbook. The Santa Barbara Museum of Art acquired work from her 2019 solo exhibit at the Soloway Gallery.
Elizabeth graduated from the Moore College of Art and Design in Philadelphia in the 1980s before attending the Mason Gross School of the Arts graduate program at Rutgers University, where she received the Outstanding Graduate Student Award at Rutgers University in 1999. Elizabeth received the New York Foundations Fellowship Award in Painting in 2012.
In addition to her painting career, Elizabeth worked in film and television as a scenic charge from 1996 through 2017 on a range of projects, including Eat, Pray, Love, Boardwalk Empire, Eternal Sunshine of the Spotless Mind and Limitless, among many other films and series.
Elizabeth was born in 1964 and raised in Long Island, NY. She lived in Brooklyn and the Catskills before moving to Glen Cove, NY. She is the youngest of eight children. After her FTD diagnosis, she has continued to paint and draw.
Two Sad Standing Men
Elizabeth Bonaventura, NY
Two Sad Standing Men, 2017
Casein Paint and Graphite on Paper
Elizabeth Bonaventura has been painting professionally for the last 25 years. In the fall of 2023, Elizabeth Bonaventura had a solo exhibition at the Gallery at Heimbold, Sarah Lawrence College, entitled "If we change the way we look at things, do the things we look at change? The Heimbold collection spans almost 25 years of art making, featuring pieces from 1995-2019.
She has been included in shows at Schroeder Romero & Shredder Gallery, NY; Kinkead Contemporary, Los Angeles; Soloway Gallery, Brooklyn, NY; and 106 Green Gallery, Brooklyn. In 2018, she was awarded a MacDowell Artists Fellowship, a renowned Artists residency program in New Hampshire founded in 1907. During the MacDowell Summer Residency Program 2018, she completed 13 drawings in Casein Paint and 26 in her sketchbook. The Santa Barbara Museum of Art acquired work from her 2019 solo exhibit at the Soloway Gallery.
Elizabeth graduated from the Moore College of Art and Design in Philadelphia in the 1980s before attending the Mason Gross School of the Arts graduate program at Rutgers University, where she received the Outstanding Graduate Student Award at Rutgers University in 1999. Elizabeth received the New York Foundations Fellowship Award in Painting in 2012.
In addition to her painting career, Elizabeth worked in film and television as a scenic charge from 1996 through 2017 on a range of projects, including Eat, Pray, Love, Boardwalk Empire, Eternal Sunshine of the Spotless Mind and Limitless, among many other films and series.
Elizabeth was born in 1964 and raised in Long Island, NY. She lived in Brooklyn and the Catskills before moving to Glen Cove, NY. She is the youngest of eight children. After her FTD diagnosis, she has continued to paint and draw.
Two Heads
Elizabeth Bonaventura, NY
Two Heads, 2015
Casein Paint and Graphite on Paper
Elizabeth Bonaventura has been painting professionally for the last 25 years. In the fall of 2023, Elizabeth Bonaventura had a solo exhibition at the Gallery at Heimbold, Sarah Lawrence College, entitled "If we change the way we look at things, do the things we look at change? The Heimbold collection spans almost 25 years of art making, featuring pieces from 1995-2019.
She has been included in shows at Schroeder Romero & Shredder Gallery, NY; Kinkead Contemporary, Los Angeles; Soloway Gallery, Brooklyn, NY; and 106 Green Gallery, Brooklyn. In 2018, she was awarded a MacDowell Artists Fellowship, a renowned Artists residency program in New Hampshire founded in 1907. During the MacDowell Summer Residency Program 2018, she completed 13 drawings in Casein Paint and 26 in her sketchbook. The Santa Barbara Museum of Art acquired work from her 2019 solo exhibit at the Soloway Gallery.
Elizabeth graduated from the Moore College of Art and Design in Philadelphia in the 1980s before attending the Mason Gross School of the Arts graduate program at Rutgers University, where she received the Outstanding Graduate Student Award at Rutgers University in 1999. Elizabeth received the New York Foundations Fellowship Award in Painting in 2012.
In addition to her painting career, Elizabeth worked in film and television as a scenic charge from 1996 through 2017 on a range of projects, including Eat, Pray, Love, Boardwalk Empire, Eternal Sunshine of the Spotless Mind and Limitless, among many other films and series.
Elizabeth was born in 1964 and raised in Long Island, NY. She lived in Brooklyn and the Catskills before moving to Glen Cove, NY. She is the youngest of eight children. After her FTD diagnosis, she has continued to paint and draw.
1957 TBird, West Virginia
Lorraine Bonaventura, NY
1957 TBird, West Virginia, 1976
Oil on Canvas
Lorraine Bonaventura leads Lorraine Bonaventura Architect, an NYC-based firm specializing in modern design and historic preservation. Recognized for blending these elements seamlessly, she has garnered accolades from AIA, C & G publications, and Remodelista, as well as having her work published in numerous places like Cottages and Gardens, At Home, Houzz and more.
With a career spanning renowned projects like the IBM Headquarters and Columbia Broadcasting Corporate offices, Bonaventura's expertise extends from large-scale institutions to residential gems dotting NYC, the Hudson River Valley, and Long Island's East End. Apart from her practice, she's contributed to architectural education and served as Chair of the Committee on Design for the NYC AIA Chapter. Bonaventura is actively involved in Brooklyn's cultural and neighborhood advocacy, lending her expertise to organizations like BRIC Arts Media and the Brooklyn Heights Association.
Her sister, Elizabeth Bonaventura, was diagnosed with FTD in 2018.
Wooden Box with Inuit Paintings and Whale Collection
James Wayne Borland, Canada
Wooden Box with Inuit Paintings and Whale Collection, 2023
Wood, Paint
Wayne was diagnosed with CAA and FTD in 2020. He has become very creative as the years go on and finds it fills his days and gives him great enjoyment.
The Stare
Andrea Bridge, Canada
The Stare, 2022
Oil on Wood
Andrea is 55 and lives in a small town in Ontario. She was diagnosed at 48 with FTD. She lives with her wife and 21 year old triplets. She has drawn and painted since she could hold a pencil. Her art has changed radically since her diagnosis. Before, she was a very immaculate portrait painter. Now, her paintings are looser, darker and more free- though she prefers her current style more.
American Coot
Kerry Brinkerhoff, UT
American Coot, 2024
Photography
Kerry is 65 and was diagnosed with bvFTD and the C9orf72 gene. Before his diagnosis, he received degrees in Criminal Justice, Sociology, and Psychology. He served in the USAF as a Sergeant and then spent several years as a National Park Ranger. He has spent most of his life helping and mentoring others and likes to continue to help even now where he can. In his spare him he enjoys hiking and taking wildlife photography.
God’s Grace
Anne Cannon, AL
God’s Grace, 2023
Photography
Born in Pike County, Alabama, Anne loves looking at the images in the sky and seeing how the clouds form different shapes and colors. As a child, her grandfather would sit with her weekly to point out differences in the clouds and what information it revealed. Anne’s mother was diagnosed with FTD in 2017. As the symptoms progressed, Anne looked to the sky and wondered if she had seen what her mother had seen.
Trying to Find the Words
Nancy Carlson, MN
Trying to Find the Words, 2015
Mixed Media
Children’s Book Author and Illustrator, Nancy Carlson has written and illustrated more than 67 children’s books since 1979. In late fall 2012, Nancy heard two words from a neurologist that would rock the happy life she had created with her husband Barry McCool. Those words were frontotemporal dementia (FTD). So the journey with FTD began.
What does an author and illustrator do when the family has no health insurance, is one rent check away from being homeless, has a husband swearing at her all day long and the IRS breathing down her back? She keeps creating! Nancy continued to do books, but she also created a blog called “Putting One Foot In Front of the Oth-er.” Nancy is working on a graphic style memoir about her husbands FTD Journey.
For more information on Nancy go to www.nancycarlson.com
HOPE
Tori Carroll, PA
HOPE, 2019
Drawing
Both of Tori’s uncles, Joe and Jeff, were diagnosed with FTD. This portrait is a symbol and reminder of how delicate the brain is. When it is injured or diseased, we pray for HOPE for continued advancements in the neurological fields of all brain diseases and injuries.
Tom in the Toaster
Sarah Chandler, MA
Tom in the Toaster, 2023
Watercolor
Sarah has been a lifelong art lover and has worked many years as an art teacher. When her husband was diagnosed with dementia, they both took online watercolor classes. Sarah did this watercolor painting of her husband, Tom, while they were both seated at the kitchen table. She was fascinated by his reflection in the toaster and saw the image as a metaphor for the dementia journey with the changes and distortions it brings to both the person with the disease and their loved ones.
Path to the Sea
Tom Chandler, MA
Path to the Sea, 2021
Watercolor
Tom has been a lifelong artist and spent his career as an art director. In 2019 Tom was diagnosed with PPA. This painting was completed during an online class in 2021, interpreting the winding path to a beach with his own unique shapes and colors.
Night Night, Nuh-Nuh
Kimberly Chu, SC
Night Night, Nuh-Nuh, 2020
Photograph
Kimberly Chu is a mother of three and a birth and family lifestyle photographer living in the little mountain town of Travelers Rest, SC. She became a mother while caring for her mother, Linda, who was living with FTD. Kimberly captured and wrote poems and narratives about mothering her toddler in tandem with mothering her mother on her blog, "Turning Six Thousand."
"Turning Six Thousand is lighting the candles on your 60th birthday, and announcing with joy that you are now six thousand years old. Turning Six Thousand is dancing in six thousand memories, spinning them around, upside down, backwards, and inside out, until one of them falls into place. Turning Six Thousand is ending every day with, "have all your good for you." Turning Six Thousand is my mother's story as she journeyed through Frontotemporal dementia and mine as I became her full-time caregiver and a young mother and was determined to find Six Thousand bits of happiness to capture along the way. We turned Six Thousand together."
Checkin on Nuh-Nuh
Kimberly Chu, SC
Checkin on Nuh-Nuh, 2020
Photograph
Kimberly Chu is a mother of three and a birth and family lifestyle photographer living in the little mountain town of Travelers Rest, SC. She became a mother while caring for her mother, Linda, who was living with FTD. Kimberly captured and wrote poems and narratives about mothering her toddler in tandem with mothering her mother on her blog, "Turning Six Thousand."
"Turning Six Thousand is lighting the candles on your 60th birthday, and announcing with joy that you are now six thousand years old. Turning Six Thousand is dancing in six thousand memories, spinning them around, upside down, backwards, and inside out, until one of them falls into place. Turning Six Thousand is ending every day with, "have all your good for you." Turning Six Thousand is my mother's story as she journeyed through Frontotemporal dementia and mine as I became her full-time caregiver and a young mother and was determined to find Six Thousand bits of happiness to capture along the way. We turned Six Thousand together."
Tea Time with Nuh-Nuh
Kimberly Chu, SC
Tea Time with Nuh-Nuh, 2020
Photograph
Kimberly Chu is a mother of three and a birth and family lifestyle photographer living in the little mountain town of Travelers Rest, SC. She became a mother while caring for her mother, Linda, who was living with FTD. Kimberly captured and wrote poems and narratives about mothering her toddler in tandem with mothering her mother on her blog, "Turning Six Thousand."
"Turning Six Thousand is lighting the candles on your 60th birthday, and announcing with joy that you are now six thousand years old. Turning Six Thousand is dancing in six thousand memories, spinning them around, upside down, backwards, and inside out, until one of them falls into place. Turning Six Thousand is ending every day with, "have all your good for you." Turning Six Thousand is my mother's story as she journeyed through Frontotemporal dementia and mine as I became her full-time caregiver and a young mother and was determined to find Six Thousand bits of happiness to capture along the way. We turned Six Thousand together."
Together in the Light
Kimberly Chu, SC
Together in the Light, 2020
Photograph
Kimberly Chu is a mother of three and a birth and family lifestyle photographer living in the little mountain town of Travelers Rest, SC. She became a mother while caring for her mother, Linda, who was living with FTD. Kimberly captured and wrote poems and narratives about mothering her toddler in tandem with mothering her mother on her blog, "Turning Six Thousand."
"Turning Six Thousand is lighting the candles on your 60th birthday, and announcing with joy that you are now six thousand years old. Turning Six Thousand is dancing in six thousand memories, spinning them around, upside down, backwards, and inside out, until one of them falls into place. Turning Six Thousand is ending every day with, "have all your good for you." Turning Six Thousand is my mother's story as she journeyed through Frontotemporal dementia and mine as I became her full-time caregiver and a young mother and was determined to find Six Thousand bits of happiness to capture along the way. We turned Six Thousand together."
Finally, a Game with Nuh-Nuh
Kimberly Chu, SC
Finally, a Game with Nuh-Nuh, 2020
Photograph
Kimberly Chu is a mother of three and a birth and family lifestyle photographer living in the little mountain town of Travelers Rest, SC. She became a mother while caring for her mother, Linda, who was living with FTD. Kimberly captured and wrote poems and narratives about mothering her toddler in tandem with mothering her mother on her blog, "Turning Six Thousand."
"Turning Six Thousand is lighting the candles on your 60th birthday, and announcing with joy that you are now six thousand years old. Turning Six Thousand is dancing in six thousand memories, spinning them around, upside down, backwards, and inside out, until one of them falls into place. Turning Six Thousand is ending every day with, "have all your good for you." Turning Six Thousand is my mother's story as she journeyed through Frontotemporal dementia and mine as I became her full-time caregiver and a young mother and was determined to find Six Thousand bits of happiness to capture along the way. We turned Six Thousand together."
A Smile for Henry
Kimberly Chu, SC
A Smile for Henry, 2020
Photograph
Kimberly Chu is a mother of three and a birth and family lifestyle photographer living in the little mountain town of Travelers Rest, SC. She became a mother while caring for her mother, Linda, who was living with FTD. Kimberly captured and wrote poems and narratives about mothering her toddler in tandem with mothering her mother on her blog, "Turning Six Thousand."
"Turning Six Thousand is lighting the candles on your 60th birthday, and announcing with joy that you are now six thousand years old. Turning Six Thousand is dancing in six thousand memories, spinning them around, upside down, backwards, and inside out, until one of them falls into place. Turning Six Thousand is ending every day with, "have all your good for you." Turning Six Thousand is my mother's story as she journeyed through Frontotemporal dementia and mine as I became her full-time caregiver and a young mother and was determined to find Six Thousand bits of happiness to capture along the way. We turned Six Thousand together."
Eagle
Bob Clark, OR
Eagle, 2020
Acrylic
Bob Clark lives in Southern Oregon with his loving family, which includes his beautiful wife and their four grown adult kids, each with their own growing families. Bob had a long career owning his own construction company. It came to an abrupt end 8 years ago when he was diagnosed with FTD. This journey has been a rollercoaster of ups and downs, though one thing remains true: Bob has a talent and passion for art, which started when he was a young boy and has only improved with age.
Lion
Bob Clark, OR
Lion, 2018
Acrylic
Bob Clark lives in Southern Oregon with his loving family, which includes his beautiful wife and their four grown adult kids, each with their own growing families. Bob had a long career owning his own construction company. It came to an abrupt end 8 years ago when he was diagnosed with FTD. This journey has been a rollercoaster of ups and downs, though one thing remains true: Bob has a talent and passion for art, which started when he was a young boy and has only improved with age.
Veins of a Leaf
Bob Clark, OR
Veins of a Leaf, 2021
Scratch Paper
Bob Clark lives in Southern Oregon with his loving family, which includes his beautiful wife and their four grown adult kids, each with their own growing families. Bob had a long career owning his own construction company. It came to an abrupt end 8 years ago when he was diagnosed with FTD. This journey has been a rollercoaster of ups and downs, though one thing remains true: Bob has a talent and passion for art, which started when he was a young boy and has only improved with age.
Elk
Bob Clark, OR
Elk, 2017
Mixed Media
Bob Clark lives in Southern Oregon with his loving family, which includes his beautiful wife and their four grown adult kids, each with their own growing families. Bob had a long career owning his own construction company. It came to an abrupt end 8 years ago when he was diagnosed with FTD. This journey has been a rollercoaster of ups and downs, though one thing remains true: Bob has a talent and passion for art, which started when he was a young boy and has only improved with age.
The Sun Will Rise
Kacey Claytor, FL
The Sun Will Rise, 2017
Oil on Canvas
Kasey Claytor has over thirty years of experience in the investment and financial advisory business, counseling clients for retirement, college funding, estate wealth transfer, and wealth building. In 2005 she formed Osprey Money Management, LLC, a registered independent advisory service. She has published three financial books, two fiction books, a book of poetry, and a children’s book.
Claytor believes that the power to grow in self-knowledge and awareness makes desired situations possible, and her mission is to guide others toward success in all areas of their lives. A lifelong meditator, Claytor earned her certification as a meditation instructor through the Chopra Center for Wellbeing in Carlsbad, CA in 2006. She is also an Ayurvedic consultant, which is a five-thousand-year-old body of knowledge in the health sciences; and has studied methods to enrich, enliven, and bring wellbeing to her readers, meditation students, and clients. She lives along a lagoon in Florida with her husband and dog, Jack. Her son was diagnosed with FTD in 2019 and passed away in 2023.
When the Brain Won’t Oblige
By Kasey Claytor
It's alarming
That's true
When the brain won't oblige
You can't remember
What was just said
You have to change
How you do things
Writing down the happenings
Each day
Until you can't remember to do even that
So, you take photos
With your phone
What you ate
Who you saw
Where you went
With who
Hundreds of photos
And you still smile
All the time
Because you are naturally
In the present moment
In every moment
Not weighed down
By societal mores
Such as how you look,
How you sound
You don't judge others
You accept everyone
And assume they mean well
And you are peaceful
You consistently find
The silver lining
And treat all equally
You've accepted your fate
And we just don't know how
But we let you be
Don't disagree
Because you are always right
People looking in
From their regular lives
Think it's horrible
What's happened to you
In fact, they feel sorry for you
We feel sorry for them
Those who don't see you
Our Buddha boy
You are teaching us
When the Brain Won’t Oblige
Kacey Claytor, FL
When the Brain Won’t Oblige, 2017
Poem
Kasey Claytor has over thirty years of experience in the investment and financial advisory business, counseling clients for retirement, college funding, estate wealth transfer, and wealth building. In 2005 she formed Osprey Money Management, LLC, a registered independent advisory service. She has published three financial books, two fiction books, a book of poetry, and a children’s book.
Claytor believes that the power to grow in self-knowledge and awareness makes desired situations possible, and her mission is to guide others toward success in all areas of their lives. A lifelong meditator, Claytor earned her certification as a meditation instructor through the Chopra Center for Wellbeing in Carlsbad, CA in 2006. She is also an Ayurvedic consultant, which is a five-thousand-year-old body of knowledge in the health sciences; and has studied methods to enrich, enliven, and bring wellbeing to her readers, meditation students, and clients. She lives along a lagoon in Florida with her husband and dog, Jack. Her son was diagnosed with FTD in 2019 and passed away in 2023.
Leaving
By Anthony Cordasco
There were no packed bags,
A sign.
No hangers huddled
Abandoned in a closet,
No neatly folded clothing
Deserting sachet scented drawers.
Too subtle too
Were depleted memories;
Interests,
Friendships,
Names.
Conversation
Drifted,
Concentration lapsed,
The flower garden failed
To call,
Loving was a chore.
Silent wonder
Questioned.
Books lost meaning.
Forgotten
Spinning wheels,
Paint brushes,
Were sold.
There were no tears
At gravesites,
Gifts to buy,
Notes to write,
Cards to send.
If only I had known
That you were leaving.
Much needs attention,
That is neglected and forgotten
Now;
For the person you are.
Many things
Could have been asked,
Should have been said
Then;
For the person you were.
If only I had known
That you were leaving.
A sign.
That disease could
Extinguish so completely,
A life.
When the Brain Won’t Oblige
Anthony Cordasco, NJ
Leaving, 2018
Poem
Anthony is a caregiver for his wife, Julie Gerow, who was diagnosed with FTD eight years ago. His dedication to caregiving has left little room for much else, but he enjoys writing poetry when he can.
Ely Cathedral
By Anthony Cordasco
Ely
I can see you
Clearly
(In the photo
And in my mind)
Standing on the roof,
Balanced on the edge
Of Ely Cathedral
Shortly after our arrival
Defying tired
And time change;
Fear, felicity and fascination
In your eyes,
Then.
I hold the image
But
You don’t recognize the people;
(Us),
Now.
I look at it
and I wonder;
If you
Were never there
Now,
Was
I,
Ever there
Then?
If you’re
Not here
Now,
To share the past
Then,
Where am
I
Then,
Forever?
What shall I do
With this
Memory
And Photo,
Alone
Always?
Ely Cathedral
Anthony Cordasco, NJ
Ely Cathedral, 2018
Poem
Anthony is a caregiver for his wife, Julie Gerow, who was diagnosed with FTD eight years ago. His dedication to caregiving has left little room for much else, but he enjoys writing poetry when he can.
Because of You
By Alison Cruz, Spring 2018
You make silly jokes!
You celebrate & mourn
You learn with curiosity
You acknowledge your roots
You help without hesitation
You heal with words & presence
You thank & make peace
You apologize & forgive
You give freely
Because of you, I know what to do
Because of You
Alison Cruz, CA
Because of You, 2018
Poem
Alison wrote these words in honor of her dad, Roger, as he was spiraling through really tough behavioral symptoms in early 2018.
Lady in Christmas Red
Brian Douglas, AZ
Lady in Christmas Red, 2024
Needlepoint with Beads
Brian Douglas was a partner in a CPA firm until his diagnosis of FTD/PPA at the age of 61. For the last four years his passion has become needlepoint.
Venetian Seascape
Brian Douglas, AZ
Venetian Seascape, 2023
Needlepoint with Beads
Brian Douglas was a partner in a CPA firm until his diagnosis of FTD/PPA at the age of 61. For the last four years his passion has become needlepoint.
Chinese Longevity
Brian Douglas, AZ
Chinese Longevity, 2023
Needlepoint with Beads
Brian Douglas was a partner in a CPA firm until his diagnosis of FTD/PPA at the age of 61. For the last four years his passion has become needlepoint.
Sparks of Silver in Her Hair
By Susan Dunbar
Sparks of silver in her hair
Cast glints of sunlight everywhere.
Her gaze laid bare my soul to fall
Into its depths; I went, in thrall.
Tumbling forever in a moment's time,
With mingled fear and sweet sublime.
She held me there, so safe and sure,
In liquid beauty, strong and pure.
I sipped and savored every drop,
Fearful that it soon may stop.
The wisdom of so many years,
The waterfall of many tears
Did fill me with such sweet surprise.
How did I fall into her eyes?
How could this feel so right, like home,
Like I never had to be alone?
In her memories I dwelt,
Touching all the things she'd felt.
I'd never known these things were here,
So far away and yet so near.
Why had I never looked so deep
Into those eyes that made me weep?
I lingered long there, loathe to leave,
Eager not again to grieve.
But when at last I did ascend,
I found my soul had made amend.
I gazed again into her eyes,
But found the old familiar guise.
There were no depths, there was no thrall.
Again there was no one at all.
Sparks of Silver in Her Hair
Susan Dunbar, NC
Sparks of Silver in Her Hair, 2020
Poem
Retired Nurse Midwife Susan Dunbar’s family bears the weight of the MAPT gene within her family lineage, having witnessed the devastating toll it’s taken on her mother, sister, and numerous relatives. Confronting the knowledge of genetic inheritance, Susan penned this poem following her mother’s passing, grappling with the feat of passing on the gene to her loved ones. Despite this uncertainty, she embraces each day with vigor, cherishing precious moments spent with her children and grandchildren.
Tree-Lined Stream
David Duncan, IN
Tree-Lined Stream, 2023
Acrylic
David Duncan is a retired plant specialist who lives with his wife, Janine, and their dog, Chester, in Lafayette, IN. There, he engages in local painting classes and is a volunteer with the Master Gardener program. Dave’s interest in painting began during graduate school, but during retirement, much of his time is committed to his craft. Despite his diagnosis with FTD, Dave has been inspired by many photos taken by his family, bringing them to life on canvas since taking up his brush again in 2020.
Chester
David Duncan, IN
Chester, 2023
Acrylic
David Duncan is a retired plant specialist who lives with his wife, Janine, and their dog, Chester, in Lafayette, IN. There, he engages in local painting classes and is a volunteer with the Master Gardener program. Dave’s interest in painting began during graduate school, but during retirement, much of his time is committed to his craft. Despite his diagnosis with FTD, Dave has been inspired by many photos taken by his family, bringing them to life on canvas since taking up his brush again in 2020.
Stelle’s- Family Storefront
David Duncan, IN
Stelle’s- Family Storefront, 2023
Acrylic
David Duncan is a retired plant specialist who lives with his wife, Janine, and their dog, Chester, in Lafayette, IN. There, he engages in local painting classes and is a volunteer with the Master Gardener program. Dave’s interest in painting began during graduate school, but during retirement, much of his time is committed to his craft. Despite his diagnosis with FTD, Dave has been inspired by many photos taken by his family, bringing them to life on canvas since taking up his brush again in 2020.
Tramonto
Simona Ferrari, Italy
Tramonto, 2023
Photograph
At 51, Simona, a devoted mother, wife and caregiver, confronts the challenges of a bvFTD diagnosis. Despite this, her love for nature and photography remains unwavering, offering her solace and capturing moments of beauty amidst adversity.
Makamae (Hawaiian for My Precious One)
Mark Moriarty & Patrick Fisher, OR
Makamae (Hawaiian for My Precious One), 2023
Wood, Sea Glass, Photograph
Mark Moriarty, known for his craftsmanship in custom home design, found inspiration on Maui for twenty-five years before succumbing to FTD in 2024. Meanwhile, Patrick Fisher, a skilled Northwest photographer, immortalizes moments through his lens, including a moment captured during a Maui sunset.
Their collaborative piece, born amidst Mark’s FTD battle, intertwines his enduring creativity with Patrick’s captured memories. Despite challenges, Mark’s joy in simple pleasures, like beachcombing with his wife Carol, persisted, leading to the creation of this mosaic frame, lovingly crafted for his daughter Melissa. Inscribed on the back top of the frame is “With Love For Melissa! Your Dad - April 2019”. On the bottom is “Sea Glass Treasures Common, broken, cast out, suffering the winds, the waves, and the sands… hidden on the shores by the tides of time, Now a treasure… smoothed, polished, and beautiful, changed to a rare loveliness, uniquely formed by the hand of the Master.”
The Journey
By Sharon K. Garcia
The journey we take
Is a long one.
A journey only a few
Will make.
It is paved with much sadness
Much heartache.
At times much more
Then one can seem to bear.
At first, each step seems easy
As we can still remember how
Things used to be,
But the steps become wider
As those memories begin
To fade.
Birthdays, anniversaries, holidays,
Once so cherished,
Once so anticipated,
Begin to fade into
A haze of tears, fears,
Of forgotten memories.
New memories now emerge,
Of what life has now become.
We are now on a journey
Called the “Long Goodbye,”
Never knowing what today, tomorrow,
Will bring.
Living minute to minute
In a world of not knowing
When the journey will end
But certain of when it began.
The Journey
Sharon Garcia, TX
The Journey, 2024
Poetry
At 68 years old, Sharon Garcia has devoted herself to caring for her spouse, who was diagnosed with bvFTD in 2020, following years of caregiving due to pre-existing conditions. Drawing from her experiences as a caregiver for her father, who battled Alzheimer’s until his passing in 2021, she has become a passionate advocate and active participant in Alzheimer’s, FTD, and now Parkinson’s research efforts having recently been diagnosed herself.
Kitten
Scott Gehret, PA
Kitten, 2023
AI Artwork
Diagnosed with bvFTD, Scott Gehret found himself disconnected from art, a domain that he never excelled at nor held much interest in. However, with his background in technology, he decided to explore “AI Art from Text” technology, sparking a newfound journey of creative expression.
Her Cat Tabby
Julie Gerow, NJ
Her Cat Tabby, 2010
Wool Hooked Rug
Julie Gerow, a former Cytologist in hospitals across Boston and New Jersey, holds a diverse career spanning computer programming, LAN Administration, and research science. Alongside her professional pursuits, she cultivated a passion for raising Romney sheep for fiber and shared her expertise by teaching spinning, weaving, and rug hooking. Julie was diagnosed with FTD at 66 years old.
It Can’t Destroy
Abigail Hegyi, KY
It Can’t Destroy, 2024
Marker, Color Pencil
Ronnie Fowler, a victim of FTD, lives on in the memories of his 10-year-old granddaughter, Abigail Hegyi.
Vallugabahn, St. Anton, Austria 1980
Richard Hollingsworth, NY
Vallugabahn, St. Anton, Austria 1980, 1980
Photograph
Richard Hollingsworth (6/11/1949 - 10/8/2023) was a talented amateur photographer. A professional semiconductor engineer and loyal family man, photography was a passion of his from young adulthood. Richard had a masterful eye for light and contrast, and his photography deftly captured the beauty of the natural world, especially the Austrian Alps, which he loved.
Skiers in St. Anton, Austria, 1981
Richard Hollingsworth, NY
Skiers in St. Anton, Austria, 1981, 1981
Photograph
Richard Hollingsworth (6/11/1949 - 10/8/2023) was a talented amateur photographer. A professional semiconductor engineer and loyal family man, photography was a passion of his from young adulthood. Richard had a masterful eye for light and contrast, and his photography deftly captured the beauty of the natural world, especially the Austrian Alps, which he loved.
Jerry’s Bird
Debbie Horn, AL
Jerry’s Bird, 2016
Acrylic on Canvas
Debbie Horn (1951-2019) was born in Birmingham, AL and grew up in Silverhill, AL. She was awarded a B.A. degree in both Speech Pathology and Mathematics from the University of South Alabama in Mobile, AL. She was married to Jerry Horn, who now serves as an AFTD Ambassador in South Alabama. Debbie worked in the public school system for 30 years as a Speech/Language Pathologist. She was diagnosed with PPA in 2014.
Each Morning is a Fresh Start
Sandy Howe, WA
Each Morning is a Fresh Start, 2021
Acrylic on Canvas
Sandy Howe from Edmonds, WA found freedom and inspiration from her instructor’s suggestion of fingerpainting with water-soluble oils on canvas. Taking inspiration from Vincent Van Gogh, she explores her creativity through physically feeling the paint. Sandy states “When my brain settles down, the colors and design begin to dance. Feeling the paint creates a connection that the brushes do not.”
Leaves of Fall
Sandy Howe, WA
Leaves of Fall, 2024
Water Soluble Oil on Canvas
Sandy Howe from Edmonds, WA found freedom and inspiration from her instructor’s suggestion of fingerpainting with water-soluble oils on canvas. Taking inspiration from Vincent Van Gogh, she explores her creativity through physically feeling the paint. Sandy states “When my brain settles down, the colors and design begin to dance. Feeling the paint creates a connection that the brushes do not.”
Dancing Aurora Borealis
Sandy Howe, WA
Dancing Aurora Borealis, 2016
Water Soluble Oil on Canvas
Sandy Howe from Edmonds, WA found freedom and inspiration from her instructor’s suggestion of fingerpainting with water-soluble oils on canvas. Taking inspiration from Vincent Van Gogh, she explores her creativity through physically feeling the paint. Sandy states “When my brain settles down, the colors and design begin to dance. Feeling the paint creates a connection that the brushes do not.”
Walking Together Through the Darkness
David Pirogowicz, CA
Walking Together Through the Darkness, 2019
Pastels
David Pirogowicz was an accomplished athlete—an ultra-runner who ran many 100-mile races in the mountains in 24 hours. When he wasn’t out running, he volunteered in his spare time to help the elderly, fixing things around their homes and providing companionship. Throughout his life, David was always lending a hand to help others. He had an easy-going, gentle personality with a positive outlook, a beautiful smile, and a wry sense of humor. In 2013, David was diagnosed with FTD.
Towards the end of his life, when his running buddy asked him how he was dealing with his diagnosis, he responded in his signature lighthearted way, “I had a good run.”
Blue Man
David Pirogowicz, CA
Blue Man, 2019
Pastels
David Pirogowicz was an accomplished athlete—an ultra-runner who ran many 100-mile races in the mountains in 24 hours. When he wasn’t out running, he volunteered in his spare time to help the elderly, fixing things around their homes and providing companionship. Throughout his life, David was always lending a hand to help others. He had an easy-going, gentle personality with a positive outlook, a beautiful smile, and a wry sense of humor. In 2013, David was diagnosed with FTD.
Towards the end of his life, when his running buddy asked him how he was dealing with his diagnosis, he responded in his signature lighthearted way, “I had a good run.”
Galaxy of the Night Sky
Deborah Jobe, MO
Galaxy of the Night Sky, 2023
Mixed Media, Oils, Pastels, Marker
Deb Jobe, residing in St. Louis, MO, has been happily married to her husband Jon for over 18 years, with two children, a grandchild, and two beloved dogs, Tilly and Buliwfy.
Initially misdiagnosed 2019, at age 53, Deb’s diagnosis later evolved to FTD associated with CBS in May 2022. Following her diagnosis, Deb discovered a newfound creativity through art, finding solace and joy in the process, which she views as a positive outlet and source of accomplishment. Additionally, she has channeled her energy towards advocacy as a volunteer with AFTD, focusing on public policy, research, early detection, and intervention strategies for dementia. From meeting with legislators to serving as a Lived Experience panelist for the 2023 NIH/NIA National Research Summit, Deb remains committed to advancing awareness and quality of care for individuals living with FTD and their caregivers.
Feeling FTD
By John Kahn
translated text:
I
how I mourn the one who is still living
grieving what once there was
doubting the present state
how will this sorrow change?
will there be a second phase?
much is already erased
I hope after all for a recall
to see the one who once I saw
regained though my memory has flaws
I do not even know what was there then
and nothing of what has yet to come
where we are today, where we were yestermorn
the road is bumpy where we walk
up to the ankles in the dust
and yet, this may not be more than a beginning
II
step by step
the anger
the weeping
the forgetfulness
the apathy
the difficulties
the slowing down
and then your eyes will fade
those, that I could drown into
sit for hours (as I remember it) and meet your warm glance
now they wander around
filled with tears
the sun and the tears
the dripping from the roof on the windowsill
is this spring?
or just an interlude
surprisingly slippery
I fall to the ground
as if I intended to pray
kneeling
to the unavoidable
III.
the ice is rotten
the merganser swims happy by the slush
the wind foreboding spring
oo
we should be taking the boat to the sea
we should be walking off through the seasons
we should dare leave the firm ground
ooo
and you loiter behind - lost
even melancholy is gone
not even lamenting as before
oooo
it’s the time of year for stumbling
you believe the ground is smooth
and you fall head over heels
ooooo
I can hardly hear what you say any more
what is the meaning
of this weakening
oooooo
swearing about others
bombasm and spiel
Do you see the ice over there?
Will you follow me at sea?
ooooooo
meandring through the phases
slippering over rages
I do not dare the ice, the risk
there is no turning back, I know
oooooooooo
the merganser is green
so is envy
and abyss
original text:
I.
så sörjer jag den som ännu lever
en saknad av det som var
ett tvivel om det som är
hur ska denna sorg förändras
kommer det en andra fas
mycket är redan i kras
jag hoppas trots allt på ett återtåg
att få se den som jag en gång såg
återuppstånden fast minnet sviktar
jag vet inte längre vad som var då
och inget om vad som nu återstår
var är vi idag, var var vi i går
vägen är knagglig där vi går
upp till anklarna i sorgen och sörjan
och ändå är detta kanske bara början
II.
steg för steg
ilskan
gråten
glömskan
svårigheterna
långsamheten
sen kommer dina ögon att bli allt tommare
de där som jag kunde drunkna i
sitta i timtal (kändes det) och bara möta din varma blick
nu flackar blicken
och fylls av tårar
solen och tårarna
takdroppets plingande på fönsterblecken
är det vår?
eller bara en mellanakt i väntan på ny frost
överraskande halt
jag faller mot marken
som om jag skulle be
knästående
inför
det oundvikliga
III.
Isen murken
skraken munter
vinden varslar om vår
xxxxxx
vi borde te båten ut till havs
vi borde vandra ut genom årstiderna
vi borde våga lämna denna fasta mark
xxxxxxx
vilsen vandrar du efter
även vemodet har lämnat
inte ens klagandet är kraftfullt mer
xxxxxx
tröskelpunkterna som man snubblar över
så här års
man tror de stryker en medhårs
så faller man pladask
xxxxxx
jag hör dig knappt mer
och vet inte om jag kan lita på vad jag tror
vad menar du
vad är meningen
varför så menlös mot mig
xxxxxx
svordomarna över andra
svadan och svulstigheten
ser du isen där borta
hör du mig
ska vi fara till havs?
xxxxxx
vandringen genom faserna
halkandet bland fasorna
vågar mig inte ut på isen
vågar inte ta risken
fast jag vet att det inte finns någon återvändo
xxxxxx
skraken är grön
liksom avunden
och avgrunden
Feeling FTD
John Kahn, Sweden
Feeling FTD, 2024
Poetry
An ex-civil servant, Jon Kahn finds solace and expression in writing novels, poetry, and painting. His artwork serves as a lifeline, guiding him through the challenges of his wife’s illness, offering comfort and catharsis in times of hardship.
Busy Train… Busy Brain
Daniel Keuning, MI
Busy Train… Busy Brain, 2024
Mixed Media, Plywood, Paint, Paper Mache, Plastic
Diagnosed with bvFTD in February 2019 and later with ALS in July 2023, Daniel’s background as a Hospice and Palliative Care Nurse Practitioner instilled a resilience to choose joy amidst life’s challenges. Encouraged by their wife in 2023 to find a productive hobby, they embarked on building a train village with the involvement of their three older kids, transforming a plain piece of plywood into a vibrant creation using paint, paper mache, houses, and trains. This endeavor has become a source of joy and fulfillment, allowing Daniel to focus on positivity amidst adversity.
Surrounded by Stars
Lylah Largent, MN
Surrounded by Stars, 2024
Charcoal on Canvas
Lylah Largent, a sixteen-year-old artist from Minnesota, seeks to honor her late father, who passed away at the age of 36 due to FTD, by entering a work inspired by him.
Dale Latimer 1
Dale Latimer, PA
Dale Latimer 1, 2023
Acrylic
Dale is currently living with FTD.
Dale Latimer 2
Dale Latimer, PA
Dale Latimer 2, 2023
Acrylic
Dale is currently living with FTD.
Dale Latimer 3
Dale Latimer, PA
Dale Latimer 3, 2023
Acrylic
Dale is currently living with FTD.
Dale Latimer 4
Dale Latimer, PA
Dale Latimer 4, 2023
Acrylic
Dale is currently living with FTD.
Koi Koins
May Tsoi, Cananda
Koi Koins, 2023
Colored Pencil
May Tsoi, a resident of Vancouver, BC, Canada, recently celebrated her 71st birthday. Known for her resilience and determination, May overcame childhood adversity, including the loss of both parents, to fulfill her dream of becoming a nurse in Hong Kong. After immigrating to Canada and facing the loss of her husband, she persevered, retraining as a nurse and enjoying a fulfilling career at Riverview Psychiatric Hospital and BC Children’s Hospital.
Despite battling bvFTD and PPA, May approaches each day with gratitude and remains committed to helping others, embodying resilience and perseverance. Her son, Eric Li, emphasizes that dementia need not be dark, as witnessed through May’s colorful artwork and her vibrant engagement in community life with friends.
Paul by the Pond
May Tsoi, Canada
Paul by the Pond, 2023
Colored Pencil
May Tsoi, a resident of Vancouver, BC, Canada, recently celebrated her 71st birthday. Known for her resilience and determination, May overcame childhood adversity, including the loss of both parents, to fulfill her dream of becoming a nurse in Hong Kong. After immigrating to Canada and facing the loss of her husband, she persevered, retraining as a nurse and enjoying a fulfilling career at Riverview Psychiatric Hospital and BC Children’s Hospital.
Despite battling bvFTD and PPA, May approaches each day with gratitude and remains committed to helping others, embodying resilience and perseverance. Her son, Eric Li, emphasizes that dementia need not be dark, as witnessed through May’s colorful artwork and her vibrant engagement in community life with friends.
Me-Oh Meow
May Tsoi, Canada
Me-Oh Meow, 2022
Colored Pencil
May Tsoi, a resident of Vancouver, BC, Canada, recently celebrated her 71st birthday. Known for her resilience and determination, May overcame childhood adversity, including the loss of both parents, to fulfill her dream of becoming a nurse in Hong Kong. After immigrating to Canada and facing the loss of her husband, she persevered, retraining as a nurse and enjoying a fulfilling career at Riverview Psychiatric Hospital and BC Children’s Hospital.
Despite battling bvFTD and PPA, May approaches each day with gratitude and remains committed to helping others, embodying resilience and perseverance. Her son, Eric Li, emphasizes that dementia need not be dark, as witnessed through May’s colorful artwork and her vibrant engagement in community life with friends.
Cardinal Song
Jamie Lee and Jason Manning, TX
Cardinal Song, 2022
Song and Lyrics
Jamie Lee Manning, a developing singer-songwriter and full-time caregiver to her mother, Suzanne, diagnosed with bvFTD in 2018, collaborated with her brother Jason, a professional musician and producer based in Ft. Worth. In March 2022, the two siblings composed an uplifting song about Suzanne’s wish to return as a cardinal after passing. Suzanne’s love for music nurtured their family’s musical passion, making this collaboration a tribute to her and a reminder of divine presence through life’s journey, illness, and beyond. Their song honors Suzanne’s legacy and serves as a comforting reminder of God’s enduring presence.
Losing Mike
Jory Mason, MA
Losing Mike, 2023
Pastels
Jory Mason, an accomplished art director and graphic designer, has returned to her first love of painting with enthusiasm, dedicating herself to teaching art and sharing creative ideas. Her award-winning artwork has been exhibited across prestigious venues in Boston, New York, North Carolina, and New Mexico, including being featured in "Strokes of Genius 8: Exploring Texture!" by North Light Books.
Having attended L’Instituto D’Arte in Italy for her first solo exhibition, which was a resounding success, Jory further honed her skills at the New England School of Art/Design and Mass College of Art. She has attained "Master Painter" status with the International Association of Pastel Societies and recently led her inaugural international painting workshop in Tuscany.
Despite her professional achievements, Jory's journey is deeply intertwined with her husband Mike's battle with FTD, underscoring her resilience and dedication to her craft amidst life's challenges.
Timothy
Marypat McGrath, MA
Timothy, 2024
Pastels
As a retired 65-year-old, Marypat found solace in art after her husband’s diagnosis with bvFTD in January 2020. Although she graduated from art school with a degree in Art Education, she spent her career working with intellectually challenged students from middle school to high school. Recently, Marypat completed her husband’s portrait, the first one she’s done in 30 years, longing to capture his smile, which she misses dearly.
Ramblings; An FTD Journey for Orchestra
Bernard Metzger, MA
Ramblings; An FTD Journey for Orchestra, 2023
Music Sheet, Audio
Click here to view the music sheet.
Bernhard Metzger, a computer programmer with a degree in Computer Science from the University of Wisconsin, spent 40 years in the financial sector before transitioning to a full-time pursuit of music. Despite his professional background, his passion for music traces back to his school days, where he frequented the music department while not studying computers. Beginning with violin in 1971 and later adding viola under the tutelage of Jerome Lipson of the Boston Symphony, Bernhard has been an active member of community orchestras since 1975, including the Newton Symphony and the NPO.
It was through music that Bernhard met his late wife Karen, with whom he shared a love for playing in orchestras. In recent years, he embarked on a journey of musical study, delving into music theory with the goal of improving his skills. This pursuit led him to compose "Ramblings an FTD Journey" for piano, performed by Jon Bass of Berklee School of Music, and used for a fundraiser for the MGH FTD research unit. While Bernhard always cherished programming, his newfound joy in composing has led him to dedicate himself fully to music, currently studying theory with David Stevens, composition with Derek David, and continuing his viola studies with Scott Woolweaver of Boston.
BooBooX2
Maria de Leon, FL
BooBooX2, 2023
Textile, Acrylic Paint, Photograph
Maria, diagnosed with svFTD/PPA in 2015, embarked on a remarkable journey fueled by her creative talent. As a speech therapist, she dedicated over 30 years to her profession before her diagnosis. Despite the challenges of her condition, Maria found solace and purpose in art through the local hospital system's Arts in Healthcare/Art by the disABLED program. She painted over 100 ceiling tiles scattered across various medical facilities and created numerous canvas paintings, many of which were sold to support charitable causes. With the support of an art therapist, Maria continued to paint, even crafting a stuffed cat to match one of her beloved pets until the day before her passing in September 2023. Thanks to her self-motivation and passion for art, Maria maintained a high quality of life throughout her journey, leaving behind a lasting legacy of creativity and inspiration.
Our House
Maria de Leon, FL
Our House, 2016
Acrylic
Maria, diagnosed with svFTD/PPA in 2015, embarked on a remarkable journey fueled by her creative talent. As a speech therapist, she dedicated over 30 years to her profession before her diagnosis. Despite the challenges of her condition, Maria found solace and purpose in art through the local hospital system's Arts in Healthcare/Art by the disABLED program. She painted over 100 ceiling tiles scattered across various medical facilities and created numerous canvas paintings, many of which were sold to support charitable causes. With the support of an art therapist, Maria continued to paint, even crafting a stuffed cat to match one of her beloved pets until the day before her passing in September 2023. Thanks to her self-motivation and passion for art, Maria maintained a high quality of life throughout her journey, leaving behind a lasting legacy of creativity and inspiration.
Look Up at the Owl
Maria de Leon, FL
Look Up at the Owl, 2017
Acrylic
Maria, diagnosed with svFTD/PPA in 2015, embarked on a remarkable journey fueled by her creative talent. As a speech therapist, she dedicated over 30 years to her profession before her diagnosis. Despite the challenges of her condition, Maria found solace and purpose in art through the local hospital system's Arts in Healthcare/Art by the disABLED program. She painted over 100 ceiling tiles scattered across various medical facilities and created numerous canvas paintings, many of which were sold to support charitable causes. With the support of an art therapist, Maria continued to paint, even crafting a stuffed cat to match one of her beloved pets until the day before her passing in September 2023. Thanks to her self-motivation and passion for art, Maria maintained a high quality of life throughout her journey, leaving behind a lasting legacy of creativity and inspiration.
Pain.
Alyssa Nash, IA
Pain., 2017
Mixed Media, Pastel, Paper
As the child of someone suffering from FTD and living with a known genetic predisposition to the disease, Alyssa Nash has grappled with its impact on her life from an early age. Her childhood was overshadowed by witnessing the effects of FTD on her beloved father, Tom Nash, whose once beautiful soul was dimmed by this relentless disease. At 28 years old, Alyssa finds herself facing the reality of being a carrier of the gene, a truth she has struggled with for far too long. While the realization initially weighed on her, she now finds solace in knowing and is determined to take control of her life, refusing to let this disease dictate her future.
Kaleidoscope
JoAnn Nichols, TX
Kaleidoscope, 2018
Colored Pencil
JoAnn Nichols, diagnosed with bvFTD in 2014 at the age of 67, found solace and joy in creating colored pencil fill-in drawings throughout the course of her illness. Each drawing she completed brought her happiness and a sense of pride. Sadly, she passed away on August 14, 2019.
Snow Days in Western PA
Steve Parker, PA
Snow Days in Western PA, 2024
Photography
Steve Parker, who always identified as a writer and itinerant startup engineer, completed his first novel, "13 Miles from Gilman, Illinois (And It Looks like Rain)," with a determination to share more stories. However, Life had different plans, as he was diagnosed with Primary Progressive Aphasia several years ago, gradually robbing him of his words. Reluctantly relinquishing his titles as an engineer and writer, Steve has shifted his focus to another passion—photography.
The Madness in Her Mind
Elisabeth Raine, CA
The Madness in Her Mind, 2018-2019
Marker
Before FTD stole the fabric of her soul, Elisabeth (Lisa) Raine was a bright light, wonderful wife, adoring mother of two, fashionista—and a dancing queen who could always find the beat. Her creative spirit and vibrant energy went into everything she touched, from writing poetry to baking her famous chocolate cake to spending hours drawing. Elisabeth's love for the salt air, music, and her family will never be matched, and the memories she has created will last long beyond her lifetime.
Feeling FTD
By Kevin Rhodes
Apathy
Apathy, so hard to describe this,
It is not depression nor is it laziness.
It feels like a 5 ton weight is on my chest,
It makes me unable care about but use my bed as a nest.
Being unable to do a thing,
Makes my loved ones feel the sting.
When I finally come out the other end,
I feel exhausted like I fought a small war I had to defend.
I am sorry if you don't understand
So hard to describe this FTD 5 ton band.
Apathy, I just don't care!
The end.
FTD and Apathy
Kevin Rhodes, NH
FTD and Apathy, 2023
Poem
As a member of the AFTD’s Persons with FTD Advisory Council, Kevin Rhodes was diagnosed with FTD in 2021, having always been a logical and analytic thinker rather than an artist. However, after 18 months of experiencing FTD, a transformation occurred, leading to the creation of their first poem. Poetry has since become their primary means of self-expression, offering a channel to articulate their experiences with FTD.
Untitled
Walter Gautier Mayfield Sr, PA
Untitled, 1984
Pen, Pastel
Walter G. Mayfield Sr grew up in Mississippi and became a physician however he was also a self taught guitarist and artist. He rarely made time to draw. He would often sketch some of his best work in the middle of a telephone conversation. He enjoyed working with pastels, ink, and watercolor. He passed at the age of 77 in 2022.
John’s Fish
John Roth, PA
John’s Fish, 2005
Watercolor
John Roth, a senior architect for a large firm, embarked on a bitter-sweet journey after his diagnosis with FTD within two years of marrying his wife. As he regressed, he transformed into a delightful child, finding solace and purpose in painting fish. Each day, his spouse provided him with sketches of 10-15 fish, which he lovingly brought to life on canvas. Over 400 fish paintings completed, they reflected not only John’s shifting moods and mental age but also the profound impact of this therapeutic activity, turning him from an art collector into a true artist and filling his days with joy. In 2005, John died after a four-year battle with FTD at the age of 55.
Crashing
Amanda Salisbury, CA
Crashing, 2005
Acrylic on Canvas
Amanda was born and raised in Southern California. She works as a registered nurse and paints in her free time. She uses influences from nature and surrealist images in order to depict deeper emotions in which she hopes her viewers can identify with. Amanda Salisbury’s mother was diagnosed with FTD.
Pacific Triton
Susan Scarff, AZ
Pacific Triton, 2011
Carved Cottonwood Root, Bronzed
On October 13, 1998, Susan Kiser Scarff's worst fear materialized with the diagnosis of FTD after days of testing at the Mayo Clinic. Despite her initial shock and anger, her husband remained unfazed, even relieved. As the reality of their situation sank in, Susan found herself grappling with the immense responsibilities of caregiving while also facing her own emotional turmoil.
Within a year of her husband's diagnosis, Susan experienced caregiver burnout, leading her to reevaluate her priorities and eventually leave her job at the Desert Botanical Garden. The challenges of caregiving left her feeling trapped and isolated, struggling to navigate a world that had suddenly become much smaller.
Despite the difficulties, Susan found solace in sharing her experiences and insights with others through her forum, "Dementia, The Journey Ahead," which she initially started to promote her book of the same name. Over time, the forum grew into a supportive community of nearly 60,000 caregivers from around the world, offering guidance and companionship in the face of dementia's challenges.
After losing her husband to FTD in 2006, Susan found healing through writing about her experiences, culminating in the publication of her book in 2012. Today, she continues to dedicate her time to supporting caregivers and sharing her journey with others facing similar struggles.
FTD with Aphasia
By Alan Simon
Words were her tools
instructional, comforting words
for her patients
Fun soothing words read
to children
Analytical words in grand rounds
with her colleagues
Then the words escaped her
One by one
More by more
until there were none
Head nods, facial expressions
became her communication
then there were none
Aphasia it is called
Dementia shuts the door
but the mind knows behind it
The only closed mind is with others
who stop trying
assume what is not
cease meaningful communication
albeit one way
Thoughts are there
trapped in the head
NO! I’M NOT DEAD
TALK TO ME INSTEAD
What she says is not in words
but in thoughts
Why can’t you understand?
I need advocates
FTD with Aphasia
Alan Simon, CA
FTD with Aphasia, 2022
Poem
A retired public defender, coping with his wife’s FTD with Aphasia diagnosis, Alan Simon serves as her sole caregiver. Transitioning to part-time assistance, he now spends half of each day reading to his wife in her Board & Care Facility. To cope with the challenges, he channels his emotions into poetry, reflecting on their FTD-consuming lives.
The Faces of FTD No. 1- This is Where I Live Now
J-BONE, DC
The Faces of FTD No. 1- This is Where I Live Now, 2023
Acrylic on Canvas
At the crossroads of modern art and bold humor, you'll find J-BONE's stickers adorning lamp posts. They're part political satire, part social commentary, and entirely audacious. J-BONE's art cuts through societal norms, challenging the status quo with sharp wit and daring creativity. His work provokes thought, prompting viewers to confront pressing issues like hypocrisy and injustice.
For art critics, J-BONE's pieces are paradoxical. While seemingly juvenile, they captivate with authenticity and innovation. His art delves into deeper societal dialogues, peeling away layers of sanctimony and exposing harsh realities. J-BONE's creations transcend mere shock value, inviting viewers to explore complex themes with an open mind.
In essence, J-BONE's legacy is one of resilience and bold expression. His art speaks truth to power, serving as a rallying cry for a generation ready to confront injustice head-on. Despite facing personal challenges like an FTD diagnosis, J-BONE's spirit remains strong. His recent works continue to provoke thought and inspire action, leaving a lasting impact on society.
Warm Feelings
Timothy Steeves, MA
Warm Feelings, 2024
Watercolor
Timothy Steeves, a 70-year-old man diagnosed with bvFTD four years ago, is currently in the later stages of the disease and under hospice care. Despite not having spoken in two years, Timothy remains connected to his daughter through their shared interest in technology and their newfound passion for watercolors, which they have been enjoying together for about a year.
Painting by Numbers
Peter Storkerson, PA
Painting by Numbers, 2023
Acrylic on Cardboard
Peter, living with PPA and PCA (posterior cortical atrophy), holds a PhD in design and previously taught design at a university level, along with publishing academic articles. However, as FTD has affected his ability to read and write, Peter has turned to his passion for classical music. With the help of his assistant and a companion, he now focuses on developing and organizing his extensive music library.
Colored Pencils 1
Dylan Sullivan, CA
Colored Pencils 1, 2023
Colored Pencils
Dylan Sullivan from California was diagnosed with PPA in 2023.
Colored Pencils 2
Dylan Sullivan, CA
Colored Pencils 2, 2023
Colored Pencils
Dylan Sullivan from California was diagnosed with PPA in 2023.
Eyes Wide Open
Jean-Sebastien Surena, NY
Eyes Wide Open, 2023
Spoken Word, Poem
Jean-Sebastien Surena, a Haitian-American poet and spoken word artist from Queens, NY, discovered his passion for poetry in sixth grade, where his fervent love poem was deemed (by his teacher) “too passionate to share with the rest of the class.” In June 2021, he published his debut chapbook “Quarantined Thoughts,” capturing the essence of the pandemic and earning accolades with a short film adaptation. Jean’s journey as a performance artist began two years ago when he was featured in Project Feel’s 3rd anniversary event in October 2021. Since then, his performances, spanning from a traveling concert series, Jewel Tones, to the inaugural performance of a new poetry and dance fusion performance, Whispers of Rhythms, showcase his evolving voice and commitment to sharing profound human experiences, deeply influenced by his late mother’s battle with FTD, which remains a poignant theme in his work.
Jean is now working on his second collection of poems. You can find some of his work published or forthcoming in Pulsebeat Poetry Journal, Umbrella Factory Magazine, Orchards Poetry Journal, Spark & Stone, StepAway Magazine, and others. He hopes to utilize his voice to encourage others to delve into the profundity of their own experiences and show them how to transform that into art.
The Valley So Low
Tori Tinsley, GA
The Valley So Low, 2018
Acrylic on Panel
Tori Tinsley (b.1980) is an artist whose work serves as a tribute to her mother, who was diagnosed with FTD in 2009 and passed away in 2020. Her "Hug series" reflects her desire to hold onto her mother through art, portraying one figure desperately clinging to another. Tinsley holds a BFA from The University of Michigan Stamps School of Art & Design, an MAAT from the School of the Art Institute of Chicago, and an MFA from the Georgia State University Welch School of Art & Design. Her work has been featured in Art Papers, Oxford American, and New American Paintings, among others. Tinsley is a recipient of a Joan Mitchell Painters and Sculptors Grant, a City of Atlanta Emerging Artist Award, and an Idea Capital Grant. She is currently a member of the Atlanta Contemporary Studio Artist program and is represented by Laney Contemporary and Co-op Art Atlanta.
Colorful Bird- The Many Shades of FTD
Beecher Trail
Colorful Bird- The Many Shades of FTD, 2014
Watercolor
Beecher, a former patient at Cleveland Clinic Lou Ruvo Center for Brain Health in Las Vegas, was diagnosed with Primary Progressive Aphasia and Frontotemporal Degeneration BV in 2013 by Dr. Gabriel Leger. Despite never having painted before, Beecher began attending a watercolor class near his home after losing his job. He quickly developed a passion for painting, sometimes creating 2 or 3 pictures during the 3-hour class sessions. Beecher's artistic journey continued until his passing in 2016.
Untitled #1
Taylor Sesselman, NY
Untitled #1, 2018
Photograph
As a New York City photographer, Taylor Sesselman’s most prolific work captures urban landscapes, portraits, and live sound events. As long as they can remember, they have always preferred being behind the lens of a camera – and a recent diagnosis of nfvPPA has given them a much deeper understanding of why. These photos are an example of their love for people, music, and place – and how they feel most comfortable and capable of communicating with the world: through their camera, and sometimes at a distance.
Untitled #2
Taylor Sesselman, NY
Untitled #2, 2017
Photograph
As a New York City photographer, Taylor Sesselman’s most prolific work captures urban landscapes, portraits, and live sound events. As long as they can remember, they have always preferred being behind the lens of a camera – and a recent diagnosis of nfvPPA has given them a much deeper understanding of why. These photos are an example of their love for people, music, and place – and how they feel most comfortable and capable of communicating with the world: through their camera, and sometimes at a distance.
Untitled #3
Taylor Sesselman, NY
Untitled #3, 2020
Photograph
As a New York City photographer, Taylor Sesselman’s most prolific work captures urban landscapes, portraits, and live sound events. As long as they can remember, they have always preferred being behind the lens of a camera – and a recent diagnosis of nfvPPA has given them a much deeper understanding of why. These photos are an example of their love for people, music, and place – and how they feel most comfortable and capable of communicating with the world: through their camera, and sometimes at a distance.
Untitled #4
Taylor Sesselman, NY
Untitled #4, 2017
Photograph
As a New York City photographer, Taylor Sesselman’s most prolific work captures urban landscapes, portraits, and live sound events. As long as they can remember, they have always preferred being behind the lens of a camera – and a recent diagnosis of nfvPPA has given them a much deeper understanding of why. These photos are an example of their love for people, music, and place – and how they feel most comfortable and capable of communicating with the world: through their camera, and sometimes at a distance.
Untitled #5
Taylor Sesselman, NY
Untitled #5, 2022
Photograph
As a New York City photographer, Taylor Sesselman’s most prolific work captures urban landscapes, portraits, and live sound events. As long as they can remember, they have always preferred being behind the lens of a camera – and a recent diagnosis of nfvPPA has given them a much deeper understanding of why. These photos are an example of their love for people, music, and place – and how they feel most comfortable and capable of communicating with the world: through their camera, and sometimes at a distance.
A Photo of My Mom, on My Dad’s Living Room Wall
Viktor Witkowski, VT
A Photo of My Mom, on My Dad’s Living Room Wall, 2023
Oil on Raw Linen
Viktor Witkowski is a painter and filmmaker. He was born in Poland and grew up in Germany where he graduated from the Hochschule für Bildende Künste Braunschweig (HBK Braunschweig, Germany) with a combined master’s degree in Studio Art, Art History and Art Education in 2006. The same year, he immigrated to the US where he earned an MFA in Visual Arts from Rutgers University in 2010. He currently splits his time between Vermont (US) and Leipzig (DE). When he is not working on paintings and films, he teaches as lecturer in Dartmouth College’s Studio Art Department in New Hampshire.
Viktor Witkowski’s writing and criticism has been published on Hyperallergic, the Painters’ Table, in The Brooklyn Rail and the New Art Examiner. His films and videos have been screened at numerous festivals in the US and abroad including such venues as the Pergamon Museum in Berlin, the York Art Gallery in York (UK), the LA Underground Film Forum in Los Angeles, The Artists Forum Festival of the Moving Image in New York City, and the AVIFF Cannes Art Film Festival in Cannes (France). In addition, his paintings have been featured in solo and group shows across the US, as well as in France, Germany and Poland.
Bird
William T Pordy, MD
Bird, 2018
Acrylic
William Pordy, MD, was diagnosed with FTD in his 50's and died of complications of FTD in 2020, at the age of 66. Bill was a nephrologist at Mount Sinai Hospital, he donated his time to Doctors Without Borders, and was also an inventor and lover of art history.
Cow
William T Pordy, MD
Cow, 2017
Acrylic
William Pordy, MD, was diagnosed with FTD in his 50's and died of complications of FTD in 2020, at the age of 66. Bill was a nephrologist at Mount Sinai Hospital, he donated his time to Doctors Without Borders, and was also an inventor and lover of art history.
Bird on a Branch
William T Pordy, MD
Bird on a Branch, 2018
Acrylic
William Pordy, MD, was diagnosed with FTD in his 50's and died of complications of FTD in 2020, at the age of 66. Bill was a
nephrologist at Mount Sinai Hospital, he donated his time to Doctors Without Borders, and was also an inventor and lover of art history.
English 
Spanish (Mexico) 
French 
German 
Swedish 
Portuguese 
Italian 
Dutch 
Danish 
Polish 
Spanish (Spain)