April 26

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.

January 15-25, 2020

Photography: Netherlands and Mali (West Africa)

December 6, 7, 13

Metropolitan Hospital Community Photography/ Book/ Exhibition

Photoshoots: December 6, 7 & 13.

November 5

SUNY Downstate Medical College: Med student lecture

October 24-27

PRADER-WILLI SYNDROME ASSOCIATION (USA)

Conference: Caribe Royale, Orlando, Florida

Prader-Willi syndrome (PWS) is the most common known genetic cause of life-threatening obesity in children.  Although the cause is complex, it results from an abnormality on the 15th chromosome.  It occurrs in males and females equally and in all races.  Prevalence estimates have ranged from 1:8,000 to 1:25,000 with the most likely figure being 1:15,000.

Website

October 18

https://www.ashg.org/press/201907-Advocacy-Award.shtml

October 15

11th Annual Current Topics in Neonatal Nutrition and Advances in Neonatal Care Neonatology conference sponsored by The Children’s Hospital at the Albany Medical Center in New York on October 15 and 16, 2019.

October 8

Tuscarora Intermediate Unit #11:

Unified In-Service day for teachers in early childhood to career preparation and also some family support programs from Erie to Philly.

Tuscarora Intermediate Unit is a regional educational service agency meeting the needs of the public and nonpublic schools, personnel and students

October 3-5

September 18

Grand Rounds: Department of Dermatology, Resident Program 9-11 am

Lecture Hall 1B (ground floor) – Health Science Education Building

SUNY Downstate Medical Center

395 Lenox Road

Brooklyn, NY 11203

September 17

1st Year med Student Lecture @ 9am – NYC

September 12

For More Info

September 11

September 9

Geisinger College of Medicine: Scranton, PA

1 st Year Med Student lecture

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.