POV Remembers Pam White, Who Shared Her Journey through Alzheimer’s with the World

POV Original Post

Pam has been in the later stages of Alzheimer’s over the last year and, on June 6th, died peacefully at home with her family sitting by her side. POV extends our heartfelt condolences to Pam’s family and all of her loved ones.

“Pamela Steele White, gifted therapist and beloved mother, wife, and friend, died June 6. She was 69.

She was a seasonal resident of Katama.

Pamela was born in Boston, and had a self-described “fairy tale” childhood. She was raised in the Hotel Continental in Harvard Square, which was owned and managed by her father, Chauncey Steele. She often posed for paintings for her mother, renowned artist Marian Steele. Pam shared her fairy tale charm and optimism throughout her remarkable life. Pam was a unique, vibrant spirit who was loved by all who knew her.

She had many careers: a professional model, a teacher for the developmentally delayed, a social worker and health counselor at Milton Academy, and a therapist in private practice. She co-founded a Boston area a cappella group, The Second Wind, which is in its 43rd consecutive year performing. She was a trusted ally and feared opponent on the tennis court, and an exemplar sportswoman.

Even her battle with Alzheimer’s disease was transformed into a work of art in The Genius of Marian, a feature length documentary directed by her son Banker White and his wife Anna Fitch.

Above all else, she loved her family, was fiercely loyal, and made everyone around her feel heard, loved, and lucky to have known her.

Pamela is survived by her husband, Edward White, her brother Chum Steele, her children Banker White, Devon White Angelini, and Luke White, her grandchildren Leif, Elin, Dylan, Edward, and Oscar, and dozens of well-earned friends.

A memorial service will be held on Friday, June 10 at noon at the Church of the Redeemer in Chestnut Hill.

In lieu of flowers, contributions may be made to the Pamela Steele White Family Foundation, c/o Lynch Brewer Hoffman & Fink, 75 Federal St, 7th Floor, Boston, MA, 02110. The foundation will fund scholarships to deserving students in the Boston Area, among Pamela’s other charitable interests.” —Vineyard Gazette

Many PBS stations will broadcast an encore presentation of The Genius of Marian at 10 p.m. tonight, or during the coming week (check local listings).

For more resources on Alzheimer’s, aging and caregiving, use the POV discussion guide and lesson plan, or visit The Genius of Caring, an interactive story-sharing project featuring those whose lives have been touched by Alzheimer’s.

A Marriage to Remember Theatrical Screening

We are thrilled to announce our theatrical screening of our short documentary A Marriage to Remember.  The film screens May 22^nd as part of Bertha DocHouse’s Mental Health Awareness month.

A Marriage to Remember, is a loving portrait that looks at how Alzheimer’s has affected my parent’s marriage. Included in the piece is footage from both The Genius of Marian and recent footage of Ed & Pam. The short was featured in the New York TimesOpDoc series last August.

We are honored to have our film be part of such an important topic.  You can find out more information about the screening here: http://www.dochouse.org/online/news/dochouse-supports-mental-health-awareness-month-series-short-docs

The Genius of Marian on Capitol Hill

Simon Kilmurry, Devon Angelini, Senator Stabenow, David Hyde Pierce before screening

Despite last Monday being the ‘worst weather event in years’ we had an amazing screening of the Genius of Marian on Capitol Hill! Members of the Executive and Congressional branches, members of the National Alzheimer’s Advisory Council and the general public turned out to watch the film and talk about Alzheimer’s disease and caregiving. We screened the film in the beautiful Congressional Auditorium at the Capitol Hill Visitor’s Center.

My sister, Devon White Angelini, flew in the snowstorm from Boston to DC to represent the family.  Simon Kilmurry, executive producer of POV, and Aubrey Gallegos, Community Engagement & Education manager travelled from New York to welcome guests and represent the film.  Emceeing our event was actor and activist David Hyde Pierce, a  passionate and longtime Alzheimer’s advocate.  Both Mr. Hyde Pierce’s father and grandfather passed from the disease, and he has been an advocate for over 20 years. Senator Debbie Stabenow, of Michigan, spoke eloquently about her work with Alzheimer’s, in particular the HOPE for Alzheimer’s Act,  and the importance of raising awareness and increasing support throughout the community.   We were especially moved as Senator Stabenow listed every member of the White family and how each one has individually contributed to the cause. In Mr. Hyde Pierce’s opening remarks, he introduced the film as a meditation on Alzheimer’s, on caregiving, but mostly on love. Both Senator Stabenow and David Hyde Pierce have been honored by the National Alzheimer’s Association for their work promoting Alzheimer’s research and care.

“It was an honor partnering with David Hyde Pierce to share the incredible story of the White family,” said Stabenow. “Banker White has a truly remarkable gift and has shown the world that there are millions of sons, daughters and families who are supporting loved ones suffering from Alzheimer’s disease. By investing in research dollars and resources for patients and caregivers, this year can be the year we make a real breakthrough in the fight against Alzheimer’s.”

Devon Angelini, Senator Stabenow and David Hyde Pierce discussing caregiving

After the screening, Devon spoke about our mother’s progression and answered questions from the audience.  My dad, Ed White, wanted to be in DC, but the weather predictions were severe and my father made the choice to stay in Boston with my mom. Devon said “It was an honor to be part of the screening at the Congressional Auditorium at the Capitol Hill Visitor’s Center.  Hearing Senator Debbie Stabenow and David Hyde Pierce speak about their work to raise awareness and to secure more funding for Alzheimer’s research was truly inspirational.  We appreciate their support of the film and our family and are very proud that The Genius of Marian has been helping people engage in difficult, but important conversations around dementia, Alzheimer’s, caregiving, and the power of love to heal.   The audience was made up of caregivers, clinicians, activists, and people whose families have been deeply affected by Alzheimer’s disease.”

Devon stressed the importance of getting involved and suggested participating in our new story sharing project The Genius of Caring.

We are so incredibly grateful for all who came out to our screening on the 26th. Thank you’s to David Hyde Pierce, Senator Stabenow and her staff, the POV engagement team and Devon Angelini for making the event very special.

Senator Stabenow, David Hyde Pierce and Devon Angelini speaking to the audience about the film, Alzheimer’s disease and family caregiving

Photos by Emily Jan

Congressional Screening of The Genius of Marian

We are thrilled to announce a special

Congressional Screening of The Genius of Marian

Monday, January 26 • 6:00 PM

RSVP here. 

Watch the trailer here. 

“Expensive, Deadly and Growing”

This morning Abigail Jones was on CSPAN discussing her article on Alzheimer’s disease that appeared in Newsweek last week, which featured the White family.

It’s really amazing to see the deserved attention of both the article and Alzheimer’s disease. Abigail graciously mentions The Genius of Marian a few times during the show – the first time at 16:30. She shares that the film was the inspiration for her writing the article.

Abigail talked with viewers about the love and burden of caregiving, the enormous expense, and the emotional drain of Alzheimer’s disease.

We are so pleased to have our family and the film featured in both Newsweek and on CSPAN. Kudos Abigail.

Links:
CSPAN: http://www.c-span.org/video/?318596-6/washington-journal-alzheimers-disease
Newsweek article: http://mag.newsweek.com/2014/04/04/alzheimers-expensive-deadly-growing-wheres-research-money.html

The First Day of Spring

The First Day of Spring

Pam & baby Devon, April 1976

Spring Morning

Where am I going? The clouds sail by,
Little ones, baby ones, over the sky.
Where am I going? The shadows pass,
Little ones, baby ones, over the grass.

If you were a cloud, and sailed up there,
You’d sail on water as blue as air,
And you’d see me here in the fields and say:
“Doesn’t the sky look green today?”

Where am I going? The high rooks call:
“It’s awful fun to be born at all.”
Where am I going? The ring-doves coo:
“We do have beautiful things to do.”

If you were a bird, and lived on high,
You’d lean on the wind when the wind came by,
You’d say to the wind when it took you away:
“That’s where I wanted to go today!”

Where am I going? I don’t quite know.
What does it matter where people go?
Down to the wood where the blue-bells grow-
Anywhere, anywhere. I don’t know.

Banker & Devon painting in the yard in Needham MA – Spring 1978

ASA Conference, Here We Come!

Anna, Dylan and I are preparing to head down to San Diego to participate in the ASA conference. We are going down to receive the Rosalinde Gilbert Innovations in Alzheimer’s Disease Caregiving Legacy Award, presented by the Family Caregiver Alliance. We will be attending the conference and I will also be moderating  the “Family Caregivers’ Perspectives on Caregiving and Alzheimer’s” panel presented by HomeInstead Senior Care. If you are going to the conference please reach out to us at info@geniusofmarian.com.

All the Best,

Banker

Here’s more information:

Rosalinde Gilbert Innovations in Alzheimer’s Disease Caregiving Legacy Awards Reception

Thursday, March 13 | 6:30–8:00 pm 

Manchester Grand Hyatt Hotel

Join us for a reception honoring the most recent winners of the Rosalinde Gilbert Innovations in Alzheimer’s Disease Caregiving Legacy Awards.These programs focus on improving the lives of adults with Alzheimer’s disease and their family caregivers through creative expression programming, targeting diverse/multicultural communities, and organizing for advocacy and policy changes. The National Center on Caregiving of Family Caregiver Alliance and the Rosalinde and Arthur Gilbert Foundation are pleased to host this reception and invite everyone to attend!

Family Caregivers’ Perspectives on Caregiving and Alzheimer’s panel

Thursday, March 13 | 1:00-2:30 PM

Room: Coronado A (4th floor, Harbor Tower)

CEU Credits: 1.5

*** Sponsored by Home Instead Senior Care ***

This dynamic session will bring the voice of the family caregiver to the forefront of the conversation about Alzheimer’s disease. We will begin the discussion with a short video that captures our family caregivers in action and in their own homes. Following the video, we will hear directly from family caregivers as they address issues of concern to ASA members.

Camden International Film Festival Announces the Aging in Maine Screening Tour

We are thrilled to be screening the film as a part of the Aging in Maine Screening Tour. It is an extension of a collaboration with a festival, and organization and collection of people that we love. The Genius of Marian was a part of the Working films REEL AGING: Real Change residency early on in production and we were central collaborators in the Aging in Maine summit, a program co-sponsored by them and The Camden International Film Festival, supported by The Fledgling Fund during CIFF 2013.

Here are upcoming  screening times for The Genius of Marian.

Here is an excerpt from the press release by Camden International Film Festival

“Camden International Film Festival launches the Aging in Maine Screening Tour, a new statewide program that brings screenings of award-winning documentary films and discussions to more than ten different communities between March and July 2014.

The tour is the second part of CIFF’s inaugural Engagement Summit: Aging in Maine, a unique program that connects Maine-based nonprofit leaders with documentary films and filmmakers to develop community-based social action campaigns designed to engage communities in a thoughtful inter-generational dialogue around the issues of aging and dementia-related illness.

Films screened as part of the Aging in Maine tour will include CIFF’s 2013 Harrell Award for Best Documentary, The Genius of Marian, a selection of short films called Golden Shorts and other aging films including Age of Champions, First Cousin Once Removed and Last Dreams, which also received a Special Jury mention at last year’s festival.”

For more information click here!

The Genius of Marian at the MFA

We had a week of amazing screenings at the Museum of Fine Arts in Boston – Jan. 22-30. A particularly special run for us, because of all the friends and family who came out to pack the house for a solid week. We also made new connections with other families and organizations we had not yet been in touch with in the Boston area.

We are also proud to announce that one of Marian’s paintings is now in the permanent collection of the museum as a result of a conversation that started after we were invited to screen the film.  A beautiful oil painting of a Greek rural landscape hung just inside the door of the theater for the entire week.

Here is a link we just added to our site with some more information about Marian’s career and a selection of images of her artwork. A more robust website dedicated to celebrating her work in under construction.

It really felt like the project had come full circle at the MFA, in celebrating both my families bravery in sharing our story so openly and honestly AND in being able to celebrate that my grandmother’s amazing spirit and talent as an artist was being recognized.

We would like to thank everyone who joined my father for a great Q&A to a full house on Thursday, January 29th.  Thank you Diane Stern from WBZ, Susan Rowlett, Care Consultation Program Manager at Alzheimer’s Association, and Dr. Brent Forrester, Director, Geriatric Mood Disorders Research Program,Harvard Medical School.

It was a special evening – although I am still a little embarrassed about how big my head was Skyped in on-screen.

We also had wonderful press coverage for the entire week. Here is a link to a review in the Boston Globe titled: Alzheimer’s Documentary Comes Close to Genius

Here is a wonderful quote from Dr. Brent Forrester:

I found the movie to be an incredibly touching and inspiring perspective on living with a family member who is suffering the ravages of dementia. The toll that dementia takes on one’s sense of identity and purpose in life and the impact on the family was nicely portrayed. The family was incredibly generous opening up their lives to share this story in a public venue.

I appreciated the discussion after watching the film, and appreciated hearing from Banker what went into making the movie and Ed’s feelings about caring for his wife.

For me, the portrayal of the physician made me realize how difficult it is to convey all that a family may need in a medical appointment and brought home the potential power of this movie to teach students about the impact of Alzheimer’s Disease.

Brent Forester, MD
Geriatric Psychiatry Research Program
McLean Hospital 

Family Matters: Documentary Filmmaker Banker White Reimagines the Home Movie

I was recently interviewed by Simon Hodgson for a great piece that is up now on the California College of the Arts website – my Alma Mater :).  We discussed both The Genius of Marian and also the transition from art school to documentary. Thanks Simon!

– Banker White MFA 1999

“White’s interest in technical learning, collaboration, and a sense of place eventually drew him toward filmmaking. “Documentary filmmaking is definitely different from a studio practice. When you actually start to make the thing, it’s such a social activity. That’s what I like the best. Your ideas are always made much more interesting by the world.”

>>> read more HERE

TUGG Screening in Santa Monica

First TUGG screening SOLD OUT! The Genius of Marian in Santa Monica CA on Monday, February 10th.

Thank you to Monaliza Morete for hosting such a great event on February 10th at the Laemmle Monicas in Santa Monica. It was a special night for two reasons:

1) First and most importantly, the thing that was so special about this event was how meaningful it was to the host, Monaliza Morete. Monaliza reached out to us just after finding out her mom was diagnosed with Alzheimer’s at the young age of 57. She headed back home to Rio just after the screening to become her mother’s caregiver and used the event as a kind of send off. She also organized for representatives of the Southland Chapter of the Alzheimer’s Association to participate in a Q&A after the film. We have received amazing feedback from the event from all who attended and hope that this is a model for many future events to come.

2) This was our first screening with our theatrical distributor TUGG and the event was a huge success – selling out and filling a 220 seat theater. We are thrilled to be working with TUGG and think it is the perfect fit for our project as it allows anyone to host a screening and bring the film to your own community.  Click HERE to learn more about how to plan a screening of The Genius of Marian in your own community and don’t hesitate to reach out to us directly at info@geniusofmarian.com

The Genius of Marian at the Lyric in Stuart, FL – January 14th, 2014

Documentary
English/NR/85 min. 

Read more here