January 9

Penn State Children’s Hospital; Grand Rounds

Hershey, PA

February 7

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

GTFI Symposium Flyer

Screening ON BEAUTY and Presentation

Genetic Task Force of Illinois Website

February 2

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.

July 18

Photography, Thursday all day.

Click here for more conference information.

What is Sturge-Weber Syndrome?

Sturge-Weber Syndrome (SWS) (encephelotrigeminal angiomatosis) is a congenital, non-familial disorder caused by the GNAQ gene mutation.  It is characterized by a congenital facial birthmark and neurological abnormalities. Other symptoms associated with Sturge-Weber can include eye, endocrine and organ irregularities, as well as developmental disabilities. Each case of Sturge-Weber Syndrome is unique and exhibits the characterizing findings to varying degrees.

Penn State College of Medicine FRAME Workshop

Today was amazing! After a Positive Exposure presentation to the 1st Year Med Students, we then broke out into smaller groups for a FRAME Workshop. And our PEARLS Ambassador, Alexianna, was there raising awareness about Treacher Collins syndrome.

FRAME Films

1. Group 1 22 11.2 Deletion
2. Group 2 Albinism
3. Group 3 Autism
4. Group 4 Cerebral Palsy
5. Group 5 Cystic Fibrosis
6. Group 6 Down syndrome
7. Group 7 Fragile X
8. Group 8 Ichthyosis
9. Group 9 Infantile Hemangioma
10. Group 10 Marfan Syndrome
11. Group 11 Limb Salvage, Amputation and Prosthetics
12. Group 12 Moebius Syndrome
13. Group 13 Treacher Collins

FRAME Prompts – think about a patient with this condition:

1. What Health System challenges do you think this patient and her or his family may face?
2. How would you envision the optimal system of care for this patient? As you consider this question, think about such things as interprofessional teams, insurance, access to care, bioinformatics (health records and data), and quality outcomes.
3. Discuss how the Health Humanities might factor into the experience of this patient and her/his family. Consider such things as the doctor/care team-patient relationship, perceptions of dis-ability, ethical issues, and bias.
4. What is your understanding of the underlying basic science of this condition?
5. What is your understanding of potential treatments for this patient?

NYC Disability Pride Parade 2019

The Biggest and Best PARADE Yet! Thank you Mayors Office for People with Disabilities!

FRAME Film Premiere, Houston

CHILDREN”S HOUSE FOR THE SOUL Presents: FRAME Premiere in Houston: Limousines to the theater and the Paparazzi.

THE SOCIAL AND PSYCHOLOGICAL IMPACT OF LIVING WITH A SKIN DISORDER!

NYU Langone Trans Celebration Exhibition Opening

July 16

1st Year Medical Student Orientation + FRAME Workshop.

June 29

Photography and Presentation: Saturday June 29

DoubleTree by Hilton Hotel Bethesda – Washington DC

For more info.

What is Smith-Lemli-Opitz syndrome (SLOS)?

SLOS is a metabolic disorder caused by a mutation in the DHCR7 (7-dehydrocholesterol reductase) gene on chromosome 11. This gene codes for an enzyme that is involved in the production of cholesterol. People who have SLOS are unable to make enough cholesterol to support normal growth and development.

June 27

June 21-23

POSITIVE EXPOSURE Photography, workshop and presentation!

June 17

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 1^st to May 4^th 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)