Calendar

Past Events

February 7

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Pediatric Grand Rounds: Children’s Medical Center @ Winthrop-University Hospital – Long Island, NY

8:30 am – 9:30 am

Winthrop’s Children’s Medical Center has been named to U.S. News & World Report’s 2016-17 Best Children’s Hospitals rankings for demonstrating excellence in the specialties of:

  • Pediatric Diabetes and Endocrinology
  • Pediatric Urology
  • Pediatric Pulmonology

February 3

GTFI2Screen Shot 2017-01-12 at 3.49.07 PMGTFI Symposium Flyer

Screening ON BEAUTY and Presentation

Genetic Task Force of Illinois Website

February 2

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The Kennedy Institute of Ethics at Georgetown University will host its fourth annual “Conversations in Bioethics” program on February 2, 2017 on the topic of “disability.” Event info

Thursday, February 2, 2017

JOIN US AT GEORGETOWN UNIVERSITY, OR TUNE IN ONLINE AT 6PM EST:

5:00pm Student Gallery, Healy Hall, first floor
(drinks and passed hors d’oeuvres)

6:00pm Panel Discussion, Gaston Hall
(will also be live-streamed; check back for link)

We hope to see you there! Stay up to date on this year’s conversation by joining the Institute’s mailing list.


THIS YEAR’S TOPIC

What is a disability, anyway?

In an era of ever-growing pharmaceutical enhancement, what counts as intellectually disabled, and why would that matter? How does the way we define disability (and normalcy) impact the just distribution of resources in society — and the way society treats those who happen to fall outside the norm? How are foundational concepts in ethics like dignity or autonomy complicated by reflection on the many ways we are dependent on others in the course of any “normal” human lifespan?

Each year, the Kennedy Institute of Ethics convenes a wide-ranging and personal conversation among expert panelists, preceded and informed by student work on the same topic. We can’t wait to share this year’s conversation, complicating the very notion of “disability.” Join us this February, in-person at Georgetown University, or digitally via live-stream, as our team goes deep on this thought-provoking and deeply important issue.


PANELISTS

JULIA WATTS BELSER, PH.D.

LYDIA X. Z. BROWN

TERESA BLANKMEYER BURKE, PH.D.

RICK GUIDOTTI

JOHN HOCKENBERRY

DONNA R. WALTON, ED.D., CCBT


Did you know? This year’s topic celebrates one of the issues at the heart of the KIE story: disability.

The Institute was founded in 1971 with support from the Rose and Joseph Kennedy Foundation, inspired in large part by the Foundation’s ongoing commitment to advancing the rights of the disabled. This year’s topic celebrates that founding vision of a world where the voices of the powerless are made powerful through thoughtful reflection and theory-driven advocacy, and it dives deep into some of the most complicated and interesting questions in disability ethics today.

January 13

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Medical Student Lecture: 2-4pm

December 10

The Resource Exchange. Chappell Hill Mall Book signing and Santa visit!!!screen-shot-2016-11-29-at-9-56-10-am

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December 9

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University of Minnesota Medical Student Lecture

University of Minnesota
321 Church Street; 6-160 Jackson Hall
Minneapolis, MN 55455

November 10-13

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November 7

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October 30

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October 18

ASHG High School Workshop/ ON BEAUTY SCREENING

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October 15

Derma Medical, San Juan, Puerto Rico

Celebrating 50 years of our Residency Program of Dermatology.
La Concha Hotel, San Juan, PR.

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October 10

Lecture: Marshfield, WI

http://preventiongenetics.com

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October 8

The Resource Exchange Exhibition

Colorado Springs, CO

Opening: http://tre.org

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September 29

screen-shot-2016-09-12-at-12-24-02-pmExhibition and Lecture

The visit will focus on a number of themes, particularly art/photography, health communication and doctor/patient relationship training. The visit will include a public lecture on Thursday, Sept. 29 and several small group workshops and/or meetings Thursday and Friday morning.

Ohio University
Scripps College of Communication

117 Schoonover Center, One Ohio University
20 E. Union St.
Athens, OH 45701

http://ohio.edu

 

 

October 15

Derma Medical

Celebrating 50 years of Residency Program of Dermatology.
La Concha Hotel, San Juan, PR.

September 14

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Weill Cornell Medical College

1 st Medical Student Lecture

11:00 am

 

September 10-11

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Community Based Photo shoot/ Colorado Springs

Exhibition Premieres October 7

http://tre.org

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September 9

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Lecture, Annual Conference of Colorado Dermatologic Society 2016

The Inverness Hotel and Conference Center

Englewood, CO

http://www.coloradodermatology.org

August 4

Niagara Falls Memorial, The New Golisano Center POSITIVE EXPOSURE Exhibit Launch!

Christian George Meghan Willy

 

August 10-11

MS. Wheelchair America 2016 Pageant: August 8-14 in Grand Rapids, MI.

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Dr. Alette Coble-Temple crowned MWA 2016! Alette

The Mission of Ms. Wheelchair America

The mission of Ms. Wheelchair America is to provide an opportunity of achievement for women who happen to be wheelchair users to successfully educate and advocate for the more than 54 million Americans living with disabilities. Unlike traditional beauty pageants, Ms. Wheelchair America is not a contest to select the most attractive individual. It is instead a competition based on advocacy, achievement, communication and presentation to select the most accomplished and articulate spokeswoman for persons with disabilities. The selected representative must be able to communicate both the needs and the accomplishments of her constituency to the general public, the business community and the legislature. http://www.mswheelchairamerica.org

Duties of Ms. Wheelchair America

As Ms. Wheelchair America, the national title holder has numerous duties. These include promoting awareness of the need to eliminate architectural and attitudinal barriers, informing the able-bodied public of the achievements of the millions of people with disabilities across the nation, and assisting with the establishment of programs in all 50 states by promoting Ms. Wheelchair America. During her year long reign, she will have the opportunity to travel visiting advocacy groups, making public appearances and conducting radio, print ad, and TV interviews. The commitment and personal example of the titleholder serves to further the mission of Ms. Wheelchair America.

New York’s very own MS. Wheelchair New York: Jessica De La Rosa 

Jessica

July 31

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“Changing the face of Mental Illness” 

POSITIVE EXPOSURE  Introduction and Presentation then…..

Photo shoot for new Campaign in Collaboration with the National Alliance on Mental Illness (NAMI) Southeast Minnesota.

The target audience would be individuals living with a mental illness and their families. For the photo shoot I was thinking of our volunteers who volunteer for our Speaker’s Bureau. The audience for the presentation would be our board, support group facilitators, service providers, etc. I am thinking 20-25 people.

About NAMI and Speaker’s Bureau

We are the affliate of the National Organization and we are based in Rochester, MN and are called NAMI Southeastern Minnesota. All states have a NAMI nonprofit with affiliates when available. The web site is www.namisemn.org. The greater Minnesota website is www.namihelps.org The National website is www.nami.org.

July 29-30

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POSITIVE EXPOSURE at the Klippel Trenaunay Support Group Meeting at the Mayo Clinic, Rochester, MN

Conference Information

Klippel-Trenaunay (K-T) Syndrome is characterized by a localized or diffuse capillary malformation that overlies a venous malformation and/or lymphatic malformation with associated soft tissue and bone overgrowth (hypertrophy).

https://k-t.org

July 28-29

Screen Shot 2016-06-10 at 7.43.32 PMPOSITIVE EXPOSURE at the Smith Magenis Syndrome Family Conference in St. Louis, MO

Conference Information

IMG_4515Smith-Magenis syndrome (or SMS) is a chromosomal disorder characterized by a recognizable pattern of physical, behavioral, and developmental features. It is caused by a missing piece of genetic material from chromosome 17, referred to as deletion 17p11.2.

http://prisms.org

Photo of our Deirdre!!

 

 

 

 

 

 

 

July 22-23

blue_logsPOSITIVE EXPOSURE at the NOONAN Syndrome Foundation Conference at the Hilton Minneapolis/ St. Paul Mall of America

Conference Information

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July 22

Screen Shot 2016-06-10 at 6.51.09 PMPOSITIVE EXPOSURE at the 4p- Support Group Family Conference in Woodland Hills (Los Angeles), CA

Conference Brochure

Vincent4 p- is also known as Wolf-Hirschorn Syndrome; a deletion of the short are of the 4th Chromosome.

The amount of material deleted may range from about 50% of the short arm to a small break that can’t be detected by normal chromosome analysis.

Because of this wide range of deleted material, the effect on our children varies widely. Some can walk, talk and assist in their daily care while others are not verbal and require constant care.

http://4p-supportgroup.org

(Photo of our Vincent featured in the  American Journal of Medical Genetics)

 

July 20-21

new-soft-logo1POSITIVE EXPOSURE at the SOFT (Support Organization for Trisomy 18, 13 and Related Disorders in Tacoma, WA

Conference Information

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SOFT is a network of families and professionals dedicated to providing support and understanding to families involved in the issues and decisions surrounding the diagnosis and care in Trisomy 18, 13 and other  related chromosomal disorders.

http://trisomy.org

July 16-17

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POSITIVE EXPOSURE at the 12th Moebius Syndrome Foundation Conference  in Long Beach, CA

Conference Information

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Moebius syndrome is a nonprogressive craniofacial/neurological disorder that manifests itself primarily in facial paralysis. Individuals with Moebius syndrome cannot smile or frown, and do not have lateral eye movements. Many individuals with Moebius syndrome also have skeletal involvement with limb abnormalities or Poland syndrome. People with Moebius syndrome can have respiratory problems, speech and swallowing disorders, visual impairments, sensory integration dysfunction, sleep disorders, weak upper body strength and autism spectrum disorders.

July 14-15

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POSITIVE EXPOSURE at the National Organization for Albinism and Hypopigmentation (NOAH) Conference in Pittsburg, PA

Conference Information

3K6A9905Albinism is an inherited genetic condition that reduces the amount of melanin pigment formed in the skin, hair and/or eyes. Albinism occurs in all racial and ethnic groups throughout the world.

http://albinism.org

July 11-13

CHROMOSOME 18 REGISTRY and RESEARCH SOCIETY FAMILY CONFERENCE, San Antonio, TX

http://chromosome18.org

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Photo: Young adult advocate workshop, 2015 Conference

The Chromosome 18 Registry & Research Society is a lay advocacy organization composed primarily of the parents of individuals with a chromosome 18 abnormality. We consist of three separate organizations located in the United States, Australia, and Europe, all with a common mission: To help people with chromosome 18 abnormalities overcome the obstacles they face so they may lead happy, healthy, and productive lives.

July 8-9

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POSITIVE EXPOSURE at the Pallister-Killian Syndrome Conference in Bloomingdale, IL

PKS Info

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Photo of our Jake, PKS KIDS CONFERENCE , 2010

Pallister-Killian Syndrome is a chromosome abnormality when a tetrasomy of the short arm of chromosome 12 (12p) occurs for no known reason. It is also known as mosaic tetrasomy 12p, isochromosome 12p syndrome, or Teschler-Nicola/Killian Syndrome.

July 4-6

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POSITIVE EXPOSURE at the Little People of America Conference in Boston, MA

Conference Info

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June 23-24

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“…envisioning a world where all people are accepted for who they are, not how they look.”  www.ccakids.orghttp://www.ccakids.org

Kids Craniofacial Camp: Fort Lauderdale, FL

Presentation at Ice Cream Social on Thursday and All day Photography on Friday…..

June 18

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June 14

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Grand Rounds at UCSF Benioff Children’s Hospital Oakland, CA

8:00 am

June 11 – August 15

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At Valley Beth Shalom, Encino, CA

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POSITIVE EXPOSURE Exhibition

http://vbs.org

 

June 4

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A Children’s House for Pediatric Dermatology
1976 W Dallas Street
Houston TX, 77019

Photoshoot and presentation

Children’s House Website

June 3

logo@2xArcadia University Genetics Program – Glenside, PA

1:00 pm – 2:15 pm

Great Room of the University Commons Building

Arcadia University

450 S. Easton Road

Glenside, PA 19038

June 2

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Rare Cancer Illuminated: a View from Within

A POSITIVE EXPOSURE Collaboration

American Society of Clinical Oncology: AtlanticLIVE Town Hall

Exhibition Premiere today

View CNN Article

 

June 1-6

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POSITIVE EXPOSURE Exhibition at UNESCO in Paris
Sixth Human Variome Project Conference

May 27

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POSITIVE EXPOSURE EXHIBITION and PRESENTATION

ESPD website

May 24

Pierre Fabre International Convention, Toulouse, France

Pierre Fabre Dermatologie plenary session

Pierre Fabre site

 

Envisioning Accessible Futures: Disability, Caregiving and Photography

  • When: March 31, 2016 6:30 pm – April 1, 2016 12:30 pm 
  • Where: 19 University Place, Great Room
  • Summary:This two-day symposium includes workshops & exhibitions featuring photographers JEAN ROBERT DANTOU and RICK GUIDOTTI; scholars FLORENCE WEBER, EVA KITTAY, SHELLEY RICE; and activist LAWRENCE CARTER-LONG exploring disability and the politics of recognition and care.

10:30 – 12:30

Workshop 2 : Beyond Disabling Images

Photography has played a longstanding role in both the dehumanization of individuals with disabilities as well as in exposing and changing inhumane conditions to which they were routinely consigned. More recently, some photographers – often in alliance with researchers — have created groundbreaking collaborative projects with people whose disabilities have been stigmatized. This roundtable features two innovative photographers – Jean Robert Dantou who has worked extensively on disability projects with French researcher Florence Weber, and American photographer/activist Rick Guidotti whose innovative “Positive Exposure” project is changing the face of genetic conditions. On this panel, they discuss the impact of such collaborative projects on themselves, the people photographed, and the goals of changing public awareness.

More Info

May 14

 

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Shoot at Nationwide, Columbus, OH

22Q 11.2 Deletion

April 6 – 11: POP-UP Center

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NYC Taxi’s 30 second Ad!!!

Positive Exposure: Pop-Up Center.

POSITIVE EXPOSURE CENTER: FREE AND OPEN TO THE PUBLIC!!

ART DIRECTORS CLUB, 106 West 29th StreetFree and Open to the Public:

AllArt Director’s Club

106 West 29th Street

(Between 6th and 7th Avenues)

NEW YORK CITY

The POP UP Center will celebrate POSITIVE EXPOSURE’s local and national partners creating opportunities for our singular voices to grow in unison.

POSITIVE EXPOSURE presents a POP- UP Center at the Art Directors Club in NYC. We will launch the multi-media exhibition on Tuesday, April 5th at our Gala, then continue with a week of events, April 6-11. The free, public events will include curated tours, screening of ON BEAUTY, performance by Heidi Latsky Dance Troupe, Diversability advocate lectures, guest appearances from Mayor’s Office for People with Disabilities and local and national advocacy stars to inspire student and professional audiences.

During the week, we will host programs for visiting classrooms, teachers, advocates, families, professionals, including health care providers in training, and the public.

 

WedFREE and Open to the Public 

Hours: 10:00 am – 6:00 pm

Positive Exposure invites NYC metropolitan area middle/high school classrooms to an extraordinary exhibition by world-class photographer, Rick Guidotti, that celebrates the richness and beauty of human diversity. Leaving the world of fashion, Rick has spent that past eighteen years working with NGOs, medical schools, universities and others to effect a sea-change in societal attitudes towards individuals living with genetic, physical, behavioral and intellectual difference.

The multi-media exhibition provides new opportunities to see individuals living with a variety of difference, first and foremost as joyous human beings.

The exhibition will serve as the focal point for an experiential program specifically designed for middle/high school audiences that is meant to create a deeper understanding and respect for diversity by evoking thought-provoking conversations with regards to human dignity and rights.

10:30 am – 12:30 pm: Open to school groups, students, teachers and the public.

  • Workshop: Make the Positive Exposure Pop-Up Center a part of your school year and celebrate the richness and beauty of human diversity! Curated exhibition tour and introductions to POSITIVE EXPOSURE programs in the modern classroom.

Student Workshop

 12:30 pm – 1:00 pm: Open to all.

  • Jason Harris, Jason’s Connection

Website: Jason’s Connection 

Founded in 2013 by the Harris Family, Jason’s Connection is dedicated to connecting us to resources that serve our needs, enrich our lives and help us meet our goals.Their mission is to create an online community that connects people experiencing disability and their family/caregivers to quality resources, support and each other. 

Jason Harris: I am a 26 year old college graduate. I love hiking, traveling with friends, films, theatre, the Cincinnati Reds and Ohio State Buckeyes. I am also on the Asperger’s Spectrum which means I face challenges with anxiety, social skills, organizational skills and certain medical issues. Asperger’s is a hidden disability like ADHD, learning disabilities, and mental health issues. 

4:00 pm – 5:00 pm: OPEN TO ALL.

  •  Curated Student and Public Tour of Exhibition: Open to all.

 5:00 pm – 5:45 pm: OPEN TO ALL.

  • ON BEAUTY, public screening, Kartemquin Films, Q&A with Rick Guidotti

Website: ON BEAUTY Q & A with Rick Guidotti

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ThurFREE and Open to the Public 

Hours: 10:00 am – 9:00 pm 

10:30 am – 12:30 pm: Open to school groups, students, teachers and the public.

  • Workshop: Make the Positive Exposure Pop-Up Center a part of your school year and celebrate the richness and beauty of human diversity! Curated exhibition tour and introductions to POSITIVE EXPOSURE programs in the modern classroom.

Make the Positive Exposure Pop-Up Center a part of your school year and celebrate the richness and beauty of human diversity Positive Exposure invites NYC metropolitan area elementary school classrooms to an extraordinary exhibition by world-class photographer, Rick Guidotti, that celebrates the richness and beauty of human diversity. Additionally, students will be treated to a special reading of the recently published Normal Norman by children’s book author, Tara Lazar.

Leaving the world of fashion, Rick has spent that past eighteen years working with NGOs, medical schools, universities and others to effect a sea-change in societal attitudes towards individuals living with genetic, physical, behavioral and intellectual difference. The exquisite photographs that Rick has taken around the world provide new opportunities to see individuals living with a variety of difference, first and foremost as joyous human beings.

The exhibition will serve as the focal point for an experiential program specifically designed for elementary audiences that is meant to create a deeper understanding and respect for human diversity.

Student Workshop Grades K to 5 pdf invitation

12:30 pm – 1:00 pm: OPEN TO ALL.

  • Tara Lazar, Funny Author Lady Story TimeTara writes quirky, humorous picture books featuring magical places that everyone will want to visit. Children’s Books: NORMAL NORMAN

Website: Tara Lazar 

also,

LITTLE RED GLIDING HOOD (RH, 2015)

I THOUGHT THIS WAS A BEAR BOOK (S&S, 2015) THE MONSTORE (S&S, 2013)

Tara loves children’s books. Her goal is to create books that children love. She writes picture books and middle grade novels. She’s written short stories for Abe’s Peanut and is featured in Break These Rules, a book of life-lesson essays for teens, edited by author Luke Reynolds. 

Tara created PiBoIdMo (Picture Book Idea Month) as the picture book writer’s answer to NaNoWriMo (National Novel Writing Month). PiBoIdMo is held on this blog every November. In 2014, PiBoIdMo featured over 1,300 participants from around the world. 

Tara was diagnosed with Multiple Sclerosis in 2010 and has permanently lost feeling in her feet and legs. 

1:00 pm – 2:00 pm: OPEN TO ALL.

  • ON BEAUTY screening, Kartemquin Films, Director,  Joanna Rudnick 

Q & A with Rick Guidotti 

Website: ON BEAUTY 

3:30 pm – 5:30 pm: Educators’ Workshop: Educators, students, families and the public

  •  POSITIVE EXPOSURE in the classroom.
  • MY FACE: Curriculum development

Workshop participants will visit the Positive Exposure photography exhibition led by Rick Guidotti, and engage in thought-provoking exercises, exploring such topics as disability, diversity, inclusion, self-esteem, acceptance and advocacy in today’s diverse classroom environment.

Participants will be introduced to POSITIVE EXPOSURE’s PEARLS Project, featured in New York Times in an article entitled, “Learning Empathy by Looking Beyond Disability” which quotes one NYC-area principal as stating “The PEARLS project teaches important lessons about tolerance as schools face an increase in bullying and serve more special education students than ever.”

Workshop for Educators invitation pdf

? Liz Matejka Grossman, Executive Director 

? Rick Guidotti, Founder 

? PEARLS / FRAME Program presentation 

? MY FACE: Curriculum development, Website: My Face 

6:00 pm – 8:00 pm: OPEN TO ALL

  • HEIDI LATSKY DANCE: 

ON DISPLAY 

A MOVEMENT INSTALLATION 

Website: Heidi Latsky Dance 

The mission of Heidi Latsky Dance is to redefine beauty and virtuosity through performance and discourse, using performers with unique attributes to bring rigorous, passionate and provocative contemporary dance to diverse audiences. 

Statement from Heidi Latsky, Founder and Artistic Director: 

I strive to create a private world onstage that the audience is drawn into. I love watching dancers so consumed by their tasks that they do not have the time to “act.” I want to see the human being who is moving; to feel their fleeting emotions that respond to, and inform, the movements they’re executing. 

I am fascinated by technical virtuosity, but I am just as compelled by someone taking a risk, showing his or her vulnerability, being in a raw state. I like to play with the balance between control and out-of-control and love sheer frenetic muscular power. I love to “twitch” when I watch my dancers. Only then do I know they’re feeling something and there is a visceral exchange. 

  • Screening of Heidi Latsky Dance short film: Soliloquy

“If film becomes the medium of preference for choreographers in the 21st century, it will be because of luminous works like Heidi Latsky’s “Soliloquy.”” Robert Johnson,

Heidi Latsky was the first participant in Dance for Film on Location at Montclair State University, underwritten by the Andrew W. Mellon Foundation, through which her first film, Soliloquy, premiered in April 2015.

A poetic interweaving of ten movement portraits, Soliloquy addresses our propensity to judge people by their physical appearance and embraces difference and the inherent isolation of being human with fierceness, frankness, and celebration.

Presentation during The Heidi Latsky installation: 

  • Screening of Heidi Latsky Dance short film: 
  • Weinberg Family Cerebral Palsy with the New York City Ballet Article 
  • Diversability Unplugged: Lightning Talks : Website: Diversability

Diversability Unplugged is a series of talks from local members of the Diversability community who are also featured in the Positive Exposure exhibition. They will share their story and what they are working on.

Diversability is a grassroots social movement to rebrand disability through the power of community founded  by Tiffany Yu in 2009. 

Diversability fosters community online and off (curated events) designed to connect, showcase, and empower people of all abilities doing amazing things. We want to get more people talking and thinking about disability as a core part of the diversity conversation. Diversability unites the disability community, engage allies in the conversation, and celebrate disability pride.

Join the conversation at @Diversability.

“More than 1 billion of us live with disabilities. We must remove all barriers that affect the inclusion and participation of persons with disabilities in society, including through changing attitudes that fuel stigma and institutionalize discrimination.” 

– Ban Ki-moon, Secretary-General of the United Nations

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FriFREE and Open to the Public 

Hours: 10:00 am – 6:00 pm 

 

10:30 am – 12:30 pm: 

  • Student Teacher Workshop

Workshop participants will visit the Positive Exposure photography exhibition led by Rick Guidotti, and engage in thought-provoking exercises, exploring such topics as disability, diversity, inclusion, self-esteem, acceptance and advocacy in today’s diverse classroom environment.

Participants will be introduced to Positive Exposure’s PEARLS Project which was featured in the New York Times in an article entitled, “Learning Empathy by Looking Beyond Disability” and which quotes one NYC-area principal as stating “The project teaches important lessons about tolerance as schools face an increase in bullying and serve more special education students than ever.”

Student Teacher Workshop Invitation pdf

12:30 pm – 1:30 pm:

  • Rachel Adams, Author: Disability has inspired the transformation of our social worlds. 
  • Jessica Murray, CUNY, Disability Studies

2:00 pm – 3:00 pm: 

  • ON BEAUTY screening, Kartemquin Films, Director, Joanna Rudnick

Q & A with Rick Guidotti 

Website: ON BEAUTY 

3:00 pm – 5:00 pm: 

  • Karlen Bader, Infused Solution contractor, Uniformed Services University Reflective Expressions: Mask Building Workshop 
  • POSITIVE EXPOSURE in the Medical School environment 

Liz Matejka Grossman, Executive Director

Rick Guidotti, Founder

FRAME Program presentation 

Joan H. Marks Graduate Human Genetics Program: Sarah Lawrence College 

“Genetic counseling is a unique career that combines expertise in genetics with the ability to clearly and compassionately discuss genetic health issues with families.  The Joan H. Marks Graduate Program in Human Genetics at Sarah Lawrence College has been training genetic counselors for 45 years.  Individuals with genetic conditions, and their families, are an important part of our learning community.  The exhibition will showcase those areas of our curriculum that are dedicated to developing a deeper understanding and perspective of the lived experiences of individuals with genetic conditions and disabilities.”

 

5:00 pm – 5:45 pm: 

Special Presentation 

Maria Hodermarska and Company

Rule Breaking: Street theater to engage in a dialogue around developmental disability. 

Website: Rule Breaking 

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SatFree and Open to our Family Advocacy Organizations and friends. All are welcome! 

Hours: 12:00 pm – 6:00 pm

Family Advocate Day!

All Local and National Advocacy organizations and their members are invited.

Come share your story.. 

 

12:30pm – 1:00 pm: 

  • Hannah Jacobs, Family Member 

Family Member works toward eradicating hate speech targeting the disability community, promoting positive images of special needs in social media, entertainment and in every day life.

Website: Family Member Inc 

 

1:00 pm – 5:00 pm

  • Karlen Bader,  Infused Solution contractor, Uniformed Services University 

Reflective Expressions: Mask Building Workshop 

Make your own mask! 

 

1:30pm – 2:00 pm: 

  • Jason Harris, Jason’s Connection

Website: Jason’s Connection 

Founded in 2013 by the Harris Family, Jason’s Connection is dedicated to connecting us to resources that serve our needs, enrich our lives and help us meet our goals.Their mission is to create an online community that connects people experiencing disability and their family/caregivers to quality resources, support and each other. 

Jason Harris: I am a 26 year old college graduate. I love hiking, traveling with friends, films, theatre, the Cincinnati Reds and Ohio State Buckeyes. I am also on the Asperger’s Spectrum which means I face challenges with anxiety, social skills, organizational skills and certain medical issues. Asperger’s is a hidden disability like ADHD, learning disabilities, and mental health issues. 

 

2:00 pm – 3:00 pm: 

  • Daniel’s Music Foundation, Performance 

Daniel’s Music Foundation uses music as the instrument to open the doors to acceptance, respect, confidence and well-being. 

Website: Daniels Music Foundation 

 

3:30 pm – 4:00 pm

  • Ray Abel, Xogo, an adapter that enables people with physical disabilities to connect to all consumer technology.

Ray’s extensive experience with the community of people with disabilities began with his work at The Muscular Dystrophy Association. It has continued in his role as a Director at Bansen Labs, and he has had a variety of unique experiences including an appearance on ABC’s Shark Tank. The talk will focus on the story of Bradley – one of Xogo’s users who has Cerebral Palsy. Ray will discuss how Bradley interacts with the world around him and how technology can open social access.

 

4:30 pm – 5:00 pm: 

  • The Honorable Justice Richard Bernstein/ Michigan Supreme Court 

Justice Richard Bernstein became the first blind justice, elected by voters statewide, to the Michigan Supreme Court in November 2014. With a commitment to justice and fairness, Bernstein began his 8-year term in January 2015. 

Prior to being elected to Michigan’s highest court, Justice Bernstein was known as a tireless advocate for disabled rights as an attorney heading the public service division for The Sam Bernstein Law Firm in Farmington Hills, Michigan. Blind since birth, Justice Bernstein is a Phi Beta Kappa graduate of the University of Michigan and earned his juris doctorate from Northwestern University School of Law. 

Committed to taking action to help clients who needed him, Justice Bernstein’s cases often set national standards protecting the rights and safety of people with and without disabilities. 

And More…….. 

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MonFREE and Open to the Public 

Hours: 10:00 am – 6:00 pm 

Final Day to experience POSITIVE EXPOSURE POP-UP Center/ Multi-Media Exhibition

 

10:30 am – 12:30 pm: Open to school groups, students, teachers and the public.

Make the Positive Exposure Pop-Up Center a part of your school year and celebrate the richness and beauty of human diversity Positive Exposure invites NYC metropolitan area elementary school classrooms to an extraordinary exhibition by world-class photographer, Rick Guidotti, that celebrates the richness and beauty of human diversity. Additionally, students will be treated to a special reading of the recently published Normal Norman by children’s book author, Tara Lazar.

Leaving the world of fashion, Rick has spent that past eighteen years working with NGOs, medical schools, universities and others to effect a sea-change in societal attitudes towards individuals living with genetic, physical, behavioral and intellectual difference. The exquisite photographs that Rick has taken around the world provide new opportunities to see individuals living with a variety of difference, first and foremost as joyous human beings.

The exhibition will serve as the focal point for an experiential program specifically designed for elementary audiences that is meant to create a deeper understanding and respect for human diversity.

12:30 pm – 3:30 pm:  OPEN TO ALL

At 20%, or 56 million, people with disabilities represent America’s largest minority — with a discretionary income of more than $220 billion – yet remain virtually invisible on our screens and stages. In this frank and provocative interactive dialogue, actor and disability advocate Christine Bruno and coordinator of equal employment opportunity (eeo) & diversity at SAG-AFTRA Becky Curran will talk about the history of representation of disabled people in the entertainment industry, myths and assumptions surrounding disability, why the lack of visibility matters and how you can help the entertainment industry move beyond antiquated stereotypes to feature authentic portrayals and tell universal stories from bold, unique and fresh perspectives.

  • Christine Bruno, Actress- Inclusion in the Arts 

Since 2005, Christine has served as Disability Advocate for Inclusion in the Arts, anational not-for-profit that promotes the full inclusion of artists of color and disabled artists in theatre, film, television and related media. She is the current chair of the NY Local SAG-AFTRA committee for Performers with Disabilities, and serves on the SAG-AFTRA National PWD, Broadway League Diversity and Actors’ Equity EEO Committees. Christine has worked throughout the U.S., U.K. and Australia. She holds an MFA in Acting and Directing from the Actors Studio Masters Program and is a lifetime member of the Actors Studio. 

  •   Becky Curran, Coordinator, EEO & Diversity, SAG-AFTRA 

Becky Curran is coordinator of eeo & diversity for SAG-AFTRA. Since joining SAG-AFTRA in April 2014, she has assisted with several diversity and inclusion efforts within the entertainment and news media industries. She also serves as president of Little People of America’s New York City chapter.Becky has worked for one of Hollywood’s top talent agencies, Creative Artists Agency. A prolific public speaker, Curran has spoken for groups throughout the United States and Kenya. She resides in New York City. 

  • ReelAbilities Film Festival, Presentations and Discussions

ReelAbilities Film Festival brings together the community to promote awareness and appreciation of the lives, stories and artistic expressions of people with different abilities. ReelAbilities Film Festival showcases films, conversations and artistic programs to explore, embrace, and celebrate the diversity of our shared human experience.

Website: ReelAbilities

 

3:30 pm – 5:30 pm

  • Xian Horn, Give Beauty Wing, Self Esteem Program: OPEN TO ALL

Xian Horn is a joyful woman with cerebral palsy who serves as teacher, speaker, beauty advocate, blogger and Exemplar for the AT&T NYU Connect Ability Challenge toward the creation of Assistive Technology. Xian’s Give Beauty Wings’ Self-Esteem programs originated and continue at NYU’s Initiative for Women with Disabilities, the Jewish Community Center Manhattan, and M.S. 131 in Chinatown. Xian’s programs have also been presented at United Cerebral Palsy, the Standing Tall school (a school for non-verbal children), and her alma mater New York City Lab School, where she was the first alumni commencement speaker in 2014. She has also spoken at the Apple Store in Soho, the UJA Federation’s Task Force on Disability, United Cerebral Palsy, The ReelAbilities Film Festival, the Naples Daily News, and the National Spinal Cord Injury Association, among many others. Xian has also run vocational workshops for the NYC Mayor’s Office for People with Disabilities for their annual Disability Mentoring Day. She also served as a spokesperson for the Starlight Children’s Foundation’s Give Actually Campaign for the Holiday Season 2015. Xian’s work has been featured by The White House Blog, Fast Company, NPR, NBC News, Fox 5 and NY1 and much more. Lastly, she is a blogger for Positively Positive – an online community of over 2.5 million readers worldwide.

 

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April 5

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POSITIVE EXPOSURE POP-UP CENTER  
Art  Directors Club
106 West 29th Street
New York City

March 3

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SOAR to the Stars 60th Anniversary – Diamond Edition
“Where Our Diamonds Sparkle”

5:30 – 7:30pm
Radisson Paper Valley Hotel
Appleton, WI

Community based exhibition and lecture

http://www.soarfoxcities.com

February 29

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Albert Einstein College of Medicine

1300 Morris Park Avenue
Bronx, NY 10461 USA

Rare Disease Day

2:00- 3:30

Lecture and Screening of ON BEAUTY with Film Director, Joanna Rudnick.

 

24 February

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Lecture: 13:00-14:15

Screening of ON BEAUTY 17:30- 19:30

4 February

The Belgian Society of Human Genetics Conference:

Leuven, 4-5 February 2016 

Conference Link

Exhibition, Lecture and Community based photography.

The Belgian Society of Human Genetics was launched in March 2000. The aim of the Society is to allow all scientists involved in the field of human genetics, working in all Belgian universities, and all independent research institutes or genetic centers in Belgium to have an official representative Society in Belgium. The BeSHG is aimed at promoting Human Genetics in its wider sense, a.o. by supporting genetic research, improving exchanges between Belgium and foreign countries, organising scientific meetings, and enhancing collaboration between Belgian labs. The BeSHG will represent the community of Belgian geneticists towards the other national and international Societies of Genetics, and is intended to become a discussion forum on scientific, professional, social and ethical issues linked to the practice of human genetics.

 

Jonah’s Introduction

I am 10 years old, in the 4th grade and moved to Michigan last summer.  I love to read, do puzzles, paint, work on computers, iPads, video games play with friends and create with Legos. I want to be a doctor or build towers and buildings for cities when I grow up.  It took me a very long time to talk and I’m still learning.  Since getting my BAHA hearing aides, I really talk a lot now! I started my own YouTube channel!  It is fun making videos and movies. I love my family, especially my little sister Farrah. I also LOVE making and having good friends that really get to know me.

January 12

BEIT ISSIE SHAPIRO Event at the MUSEUM OF TOLERANCE, Los Angeles

Website

The mission of Beit Issie Shapiro (BIS) is to provide cutting-edge services to improve quality of life for people with disabilities, and to effect social change by breaking down the barriers preventing people with disabilities from full societal integration, assuring them the rights and opportunities for maximum growth and development.

 

December 16

PCOM Medical Student LectureScreen Shot 2015-11-06 at 3.29.59 PM

December 11

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Medical Student Lecture: Change How You See: See How You Change

December 2

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November 14

The Future History of Cerebral Palsy:Unknown 8am-5pm

 

Change How You See, See How You Change at 1:45 PM Arts Panel at 2:35 PM

MEETING LOCATION: Morgan Stanley Children’s Hospital of NewYork-Presbyterian Wintergarden, Lobby Level
3959 Broadway
New York, New York 10032

November 3

 

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POSITIVE EXPOSURE: Seeing Beyond Diagnosis @ noon

In Collaboration with Bruce D. Levy, M.D.

Parker B. Francis Professor of Medicine, Harvard Medical School
Chief, Division of Pulmonary and Critical Care Medicine

Medical Director, The Lung Center, BWH

Director, Lung Research Center, Brigham Research Institute

 

October 30

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Pediatric Grand Rounds: 7-8 am

701 Grove Road, Bal Suite 5

Greenville, SC 29605

October 25

Epidermolysis Bullosa Family Day

CHLA

Children’s Hospital Los Angeles

4650 Sunset Blvd
Los Angeles, CA 90027

Presentation & Photography

 

October 24

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Presentation and Photography

Northern Illinois University (NIU)—Hoffman Estates
5555 Trillium Blvd.
Hoffman Estates, IL 60192
Phone: (847) 645-3000

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October 22-29

The 3rd annual Pittsburgh ReelAbilities Film Festival will take place at Rodef Shalom Congregation, a fully accessible venue in the Oakland area of Pittsburgh. The festival runs from October 22 – 29, 2015.

Rick will be there 22nd October ON BEAUTY & POSITIVE EXPOSURE Exhibition

Click Here for Festival Info2015_ReelA_slider

October 16

Screening: ON BEAUTY

NYU School of Dentistry

Presentation and Q & On BeautyA: 4:45 – 7pm

NYU College of Dentistry
345 E. 24th Street
(corner of First Avenue)
New York, NY, 10010

October 15

GF-30squareGolisano Foundation

30th Anniversary Celebration and Awards
George Eastman House International Museum of Photography

Rochester, NY

October 13

Keynote Speaker at the Decatur-Morgan County Chamber of Commerce’s 13th Annual Diversity Awards Dinner/Banquet

6:00PM -8:00PM at Ingalls Harbor Pavilion.1425671_10152222733482741_995967072_n

October 8

Chem RX
Chem RX Lecture
Leonard’s Palazzo
Great Neck, NY

 

Chem RX seminars are attended by Nursing Home Administrators, Directors of Nursing, CEOs, CFOs, residential directors, addiction treatment counselors, assisted living administrators and case managers. Chem Rx seminars attract professionals who look to learn and share valuable information about today’s successful strategies and future trends.

www.chemrx.net

October 7

A Special Film Lab/Time Warner/Turner/HBO Event: 6 pm

TW Media LabDiscussion: Mass Media Constructions of Beauty:  The Consequences of Allowing Judgment Based On What We Look Like Rather Than Who We Are

Time Warner Center
1 Time Warner Center
10th Floor Screening Room
New York, NY 10019

Wednesday, October 7, 2015 from 5:30 PM to 7:30 PM (EDT)

 

October 6

 

American Society of Human Genetics High School Workshop

Baltimore Convention CenterASHG
One West Pratt Street
Baltimore, Maryland 21201

www.ashg.org

September 18

Medical Student Lecture
Weill Cornell Medical College
1300 York Avenue
New York, NY 10064

www.weil.cornell.edu

September 17

The Joan H. Marks Graduate Program in Human Genetics
Lecture and Presentation of FRAME: Faces Redefining the Art of Medical Education

Sarah Lawrence College
1 Mead Way
Bronxville, NY 10708

About Genetic Counseling Graduate Program

August 21

American Academy of DermatologyScreen Shot 2015-04-23 at 4.44.36 PM
Summer Academy Meeting 2015
Speaker Presentation

New York Hilton Midtown
1335 Avenue of the Americas
New York, NY 10019

www.aad.org

August 13-15

Coffin Lowry Syndrome Foundation
Family Conference

Wellington, FL

www.clsf.info

August 7-9

The Marfan FoundationScreen Shot 2015-04-23 at 4.03.23 PM
31st Annual Family Conference

Chicago, IL

www.marfan.org

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August 4

DC Event v4[2]

Special One Night DC Screening ON BEAUTY
640 Massachusetts Ave NW
Washington, DC 20001

About ON BEAUTY

 

July 30 – August 1

Dup15q AllianceScreen Shot 2015-04-23 at 3.46.58 PM Screen Shot 2015-04-23 at 3.46.14 PM
8th International Family Conference “Stronger Together”

Hilton Orlando Lake Buena Vista
Orlando, FL

www.dup15q.org

July 26-29

The Chromosome 18 Registry & Research Society
2015 Annual Family Conference

Salt Lake Marriott Downtown at City Creek
75 South West Temple
Salt Lake City UT 84101

www.chromosome18.org

July 17-19

4th International RASopathies Symposium
Presentation & Photo Shoot

Doubletree by Hilton at SeaTac
Seattle, WA

The RASopathies Network brings together caregivers, clinicians, patients, researchers and industry to expedite treatments and cures for the RASopathies.

www.rasopathiesnet.org

July 16 & 17

The Sturge-Weber FoundationScreen Shot 2015-04-23 at 2.17.31 PM
Presentation & Photo Shoot

Chicago, IL

www.sturge-weber.org

July 2-7

Beit Issie Shapiro & Israel Elwyn
Israel

6th International Conference on Disabilities
“Unity and Diversity in Action” will take place at a time when we are witnessing a positive shift into the language of human rights, strengthened by the UN Convention on the Rights of Persons with Disabilities (CRPD)

Thursday July 2nd
Photo Shoot, Sarona

Monday July 6th
Israel Elwyn Presentation, Gala Event and Exhibition, Jerusalem

Tuesday, July 7th
Plenary Lecture Keynote Speaker, Tel Aviv

www.beitissie.org.il

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www.israelelwyn.org.il

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June 28

SKIN TO LIVE IN CAMPAIGN Exhibition
Basel, Switzerland

Featuring POSITIVE EXPOSURE images of Ambassadors  from: Australia, Brazil, Canada, Germany, Italy, Malaysia, Mexico, Spain, Taiwan, Thailand, Turkey,  and USA

June 20

Community Photoshoot

Families with 4p-, Wolf- Hirschhorn syndrome

Long Beach, CA

June 16

Community Photoshoot

Families with Jacobsen Syndrome

San Jose, CA

 

June 13

Leadership Alabama 25th AnniversaryScreen Shot 2015-04-23 at 11.57.55 AM
Keynote Speaker

Grand Hotel Marriott Resort
One Grand Boulevard
Point Clear, AL 36564

www.leadershipal.org

May 28

Presentation at National Symposium for Danone Nutricia Early Life Nutrition.
Buenos Aires, Argentina

May 8

POSITIVE EXPOSURE: Seeing Beyond Diagnosis Lecture

The Johns Hopkins University/National Human Genome Research Institute Genetic Counseling Training Program

www.genome.gov

May 5

ON BEAUTY U of WLG

Seattle: Main Campus

School of Medicine Lecture: POSITIVE EXPOSURE: Seeing Beyond Diagnosis and Screening of ON BEAUTY.

Positive Exposure: The Spirit of Difference – Health Sciences Lecture by Rick Guidotti

Date: Tuesday, May 5, 2015

Time: 9:00 am

Location: Turner Auditorium (Room D-209)

Details: The School of Medicine, MEDEX Northwest, School of Nursing, School of Dentistry, Speech and Hearing Sciences, and the Division of Physical Therapy, and the Department for Bioethics and the Humanities will host a health sciences lecture by Rick Guidotti. This lecture is geared toward members of the medical community and open to all. Rick Guidotti, a world renowned photographer, became interested in using visual arts to change the way society understands genetic differences, disability and beauty. His Positive Exposure photo and video presentation encourages students and professionals in the health sciences to see individuals with genetic differences as whole people, not just their specific diagnoses.  More information on Rick and his work can be found here: Ted Talk and Positive Exposure

Special screening of On Beauty and guided discussion led by Rick Guidotti and the film’s Director, Joanna Rudnick

Date: Tuesday, May 5, 2015

Time: 4:30 pm

Location: HUB Lyceum

Details: A recent documentary, On Beauty, chronicles the work of Rick Guidotti  and the experiences of several exceptional women he has photographed. It premiered at the Chicago film festival last October and won audience favorite for short documentary. Since premiering in October 2014 On Beauty has continued to receive awards.  More information about the film can be found here: On Beauty

Reception

Date: Tuesday, May 5, 2015

Time: 5:30 pm

Location: HUB Lyceum

Details: Help us welcome Rick Guidotti and Joanna Rucnick to campus by joining  us for food, beverages, and lively conversation.

May 4

Postcard-Sarah 1Screening ON BEAUTY

The Battery, 717 Battery Street, San Francisco, CA 94111

(From the Website) About The Battery: www.thebatterysf.com

The Battery was a unique sort of social destination. I suppose I should not have been surprised. As I walked among its members, it was clear they were most at ease on their toes. An eager, inquisitive bunch, always curious, always on the hunt for new ideas and problems to solve. So it seemed natural that this energetic establishment was their idea of a place to relax. A place that could only be called traditional if you kept in mind its city’s traditional offerings of progressive thought, diversity and intelligence with just a touch of the bizarre. They made that decked out old building come alive with ideas and excitement. The cocktails and cuisine didn’t hurt the mood either.

Indeed, here is where they came to refill their cups. To tell stories. To swap ideas. To eschew status but enjoy the company of those they respected. Here is where they came to feel at home on an evening out.

April 30

Newport Beach Film Festival: Island Cinema 2pm

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April 22

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ON BEAUTY SCREENING: Long Island University: www.liu.edu

On Beauty Documentary and Panel Discussion Apr 22

Location: Gold Coast Cinema, 7:00 PM