Positive Exposure On The Road

Past Events

January 9

 

 

Penn State Children’s Hospital; Grand Rounds

Hershey, PA

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

In connection with this temporary relief, users should consult with a medical professional if tingling and nerve pain continue over a long period of time as this may be an indication of diabetes. Monitoring the blood sugar level is essential and Nerve Pain Away is not manufactured to address this serious condition. Visit https://neuropathycure.org/nervestra-review/ for more information.

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.

June 8

Family Conference @ Boston Children’s Hospital

CLOVES Syndrome stands for Congenital, Lipomatous, Overgrowth, Vascular Malformations, Epidermal Nevi and Spinal/Skeletal Anomalies and/or Scoliosis.  CLOVES is caused by a somatic genetic mutation in a gene called PIK3CA that increases the activity of the gene. CLOVES belongs to a category of diseases known as PIK3CA-overgrowth spectrum or PROS.

https://www.clovessyndrome.org

May 30 – June 2

Positive Exposure in Perth, Australia

A collaboration with the Wilhelm Foundation and individuals that are living with an undiagnosed condition.

The Undiagnosed-a-photo-project

Undiagnosed Disease Program (UDP)

Australia’s first Undiagnosed Diseases Program (UDP) is currently underway in Western Australia. The UDP-WA aims to provide a definitive diagnosis for people with complex and long-standing medical conditions.

Project Y, lead by Dr Gareth Baynam, is a groundbreaking initiative that brings together specialist doctors to provide an answer and a diagnosis to the thousands of families who desperately need them.

May 27 -29

POSITIVE EXPOSURE in Australia.

Presenting to Genetic Counselors at the Royal Melbourne Hospital.

Undergrads at the University of Melbourne in collaboration with Dr. Ingrid Winship

Photography with individuals living with Epidermolysis Bullosa and HHT ( Hereditary hemorrhagic telangiectastic)

May 12

ROCHESTER, NY:

Positive Exposure will premier our latest FRAME films created with support from the WITH FOUNDATION!

9:15 AM – “RED CARPET” FILM SCREENING AT THE LITTLE THEATRE

FEATURING:

CP in FRAME

Autism in FRAME

Intellectual Disability in FRAME

 

May 6

Keynote: Portland, Oregon. More info about the Conference!

About ANCOR

The American Network of Community Options and Resources (ANCOR) is a national, nonprofit trade association representing more than 1,600 private community providers of services to people with disabilities. Combined, they support over one million individuals with disabilities.

Mission

ANCOR’S  mission is to advance the ability of ANCOR’S members in supporting people with intellectual and developmental disabilities to fully participate in their communities.

 

 

 

May 2

50th meeting of the German Society of Dermatology (DDG) May 1st to May 4th in 2019 in Berlin.

POSITIVE EXPOSURE Keynote presentation May 2.

April 24

Photographing 65 Advocates from AHRC over the next couple of weeks to create an exhibition during the AHRC Leadership Summit (June 7) and permanent  installations throughout their building on Maiden Lane in NYC. AMAZING!

AHRC New York City’s Mission:

A family governed organization committed to finding ways for people with intellectual and other developmental disabilities to build full lives as defined by each person and supported by dedicated families, staff and community partners.

 

April 27 & 28

POSITIVE EXPOSURE has collaborated with the Pediatric Dermatology department at U of MN to create a community based   exhibition that will be a permanent installation @ the new Pediatric Dermatology Clinic.

At University of Minnesota Masonic Children’s Hospital, pediatric dermatologists collaborate with other pediatric medical specialists—including the Center for Pediatric Vascular Lesions, the Epidermolysis Bullosa Specialty Clinic, Atopic Dermatitis Specialty Clinic and the combined services of rheumatology and dermatology.

We photographed 13 amazing ambassadors here at the  hospital to create a permanent exhibition that celebrates all kids living with skin conditions. Here are a few of the stars from today!

The installation will be STUNNING!!!

April 12 & 13

Dallas, TX

PRESENTATION and PHOTOSHOOT!!

To Learn More about HealtheVoices

Social media shapes the way people make decisions about healthcare, and onlinehealth advocates are at the forefront of this movement. In an effort to connect, support and further empower the online health advocate community, Janssen created HealtheVoices™ – a groundbreaking leadership conference created exclusively for those using social platforms to advocate for themselves and their communities. Now in its fifth year, the annual HealtheVoices Conference will take place April 12-14, 2019 in Dallas, Texas.

April 14

 

POSITIVE EXPOSURE in Collaboration with Geisinger presents Autism in FRAME. Funded by the WITH Foundation and filmed on location at Friendship House. All involved families in this production attended the red carpet global premiere of AUTISM in FRAME!

The Paparazzi was there!!!!!

Venue: Berwick Theater and Center for Community Arts (110 E Front St, Berwick, PA 18603)

 

April 27 & 28

University of Minnesota’s Pediatric Dermatology department applied for a grant to collaborate with POSITIVE EXPOSURE to create a community based exhibition that will be a permanent exhibition at their new beautiful Pediatric Dermatology Clinic.

AND IT WAS SUCCESSFUL!!!!! We will be in Minneapolis photographing April 27 & 28 with the exhibition installation projected to follow asap!!!

Stay tuned for pics…

April 12-13

Keynote Presentation and Photography

About HealtheVoices: Website

Social media continues to shape the way patients and caregivers make decisions about their healthcare, and online patient advocates are at the forefront of this movement. Patient advocates are driven by a passion to help others, but it is evident that there is a lack of emotional, financial and technical resources available to help sustain their efforts and communities over time.

To fill this gap and elevate the ever-important role of online health advocates, Janssen created HealtheVoices in 2015. Since then, HealtheVoices continues to provide tools, resources and inspiration to empower online patient advocates, improve their online communities and expand their critical reach. At HealtheVoices, attendees have the opportunity to connect and collaborate with other online health advocates and learn from experts in the fields of health, social media and advocacy.

Designed by patients for patients, HealtheVoices is an industry-first event. Each year, HealtheVoices works closely with an Advisory Panel of online patient advocates to determine the agenda, develop the content and cultivate a unique experience that meets the needs of attendees and brings value to their communities.

This year’s advisory board includes:

  • HIV Advocate, Jesus Guillen – Facebook and Twitter
  • Mental Health Advocate, Gabe Nathan – Facebook, Instagram, Twitter, and YouTube
  • IBD Advocate, Shawn Bethea – Instagram, Twitter, YouTube, and Facebook
  • Diabetes & Congestive Heart Failure Advocate, Mike Durbin – mydiabetecheart.com, Twitter, Instagram and Facebook, Twitter, Instagram and Facebook
  • Stroke & Rare Disease Advocate, Lisa Deck – lisadeck.com, Facebook, Twitter and Instagram
  • Lupus & Chronic Illness Advocate, Hetlena Johnson – Facebook, Twitter, Instagram, YouTube
  • Breast Cancer & Mental Health Advocate, Ann Marie Otis – stupiddumbbreastcancer.com,  Facebook, Twitter, Instagram
  • Cancer Advocate, Rick Davis – Twitter and Facebook

April 2

Speaking to students during their Disability Awareness Week @ Kingsborough Community College!

March 31

 

March 20 – 26

Delhi, India

Ill be in Delhi 20-26 March working in collaboration with the Wilhelm Foundation and The Institute of Medical Genetics & Genomics, Sir Ganga Ram Hospital, photographing local families that have undiagnosed conditions. This global  initiative will create community among the undiagnosed families so they dont feel so isolated and alone. There will be an International Undiagnosed Disease conference in Delhi in May and these community-based images will be exhibited then.

 

 

POSITIVE EXPOSURE 109

February 28

RARE DISEASE DAY @ PFIZER NYC

Lecture and Exhibition

February 27

Presenting to 3rd Year Medical Students at Uniformed Services University Health Sciences in Bethesda, MD

February 8

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

Positive Exposure Presentation