Calendar

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.

August 7

August 2

Mayo Clinic and Rochester Art Center:

 

July 28-29

Klippel- Trenaunay Support Group Meeting; Rochester, MN

 

 

 

July 22

Moebius Conference

St. Petersberg, FL

 

 

July 19-21

PRISMS 10th International Conference

Smith Magenis Syndrome

Pittsburgh, PA

 

July 14-16

22Q Family Meeting 2018

Where: Whistler, Canada (BC)

 

 

July 12-15

 

 

NOAH Conference 2018

National Organization for Albinism and Hypopigmentation

Where: Kansas City, MO at the Westin Kansas City at Crown Center

 

July 11

1st Year Med Students Orientation

1:00PM on Wednesday, July 11 at the HUB-Robeson Center (on main campus).

Penn State College of Medicine

University Park

1850 East Park Avenue, Suite 304

State College, PA 16803

July 1-4

Chromosome 18 Conference 2018

Renaissance Baltimore Harborplace Hotel

202 East Pratt St. Baltimore, MD 21202

A great event for self-advocates, parents of young children and adults, siblings, etc. bring the whole family!!

End the conference with the Starfish Gala and fourth of July fireworks!

 

June 25

Charlotte, NC

ECAC Conference

June 23-25

 

 

https://www.umassmed.edu/vitiligo/world-vitiligo-day-2018/

June 21 – September 21

Featuring Positive Exposure

Rochester Art Center and Mayo Clinic

With presentation on August 1.

Link

 

Our Amazing Jayne Waithera, Positive Exposure Kenya

This video is part of #CelebratingWomenWithAlbinism, a campaign by the Disability Rights Unit at the Centre for Human Rights, University of Pretoria. The campaign aims to celebrate the achievements and to highlight the stories and experiences of women with albinism.The campaign was launched in 2018 on International Albinism Awareness Day on 13 June. Celebrating Jayne Waithera (Kenya) Co-founder and Programme Director of Positive Exposure Kenya and Climb for Albinism Activist I was born in Kenya into a “normal” African family, as a person with albinism I experienced more than my fair share of challenges. I knew I was different because of the way the society treated me; even from the stares. I knew I was different in a bad way; it’s not that kind of difference that is to be celebrated. My mother abandoned me, leaving me with my grandmother because of the stigma attached to my condition. In school fellow students would cut me with blades to see if I bled. I struggled with a lot of things especially when it came to reading and writing. I was punished every other day because of my visual impairment which meant that I struggled to see my assignments and class work. When I was 12/13 I She was also taught to move closer to the board whenever she had difficulties reading. I was also taught to the simple technique of moving closer to the board whenever I had difficulties reading. My childhood was filled with discrimination and stigma and I remember my childhood experience more than any other experience I had to go through as a grown up. In the midst of all this cruelty; my grandmother was my pillar of strength. Her unwavering support and love cannot be ignored. Today, I run two initiatives on albinism. The first is Positive Exposure which focuses on education and advocacy through photography and art to change the narrative on persons with albinism. My second initiative is the Climb for Albinism.
Climb for Albinism works with women across Africa for positive impact. In September, six women with albinism will be climbing Mount Kilimanjaro to demonstrate the strength and resilience of women with albinism. Kilimanjaro is the highest point in Africa; our voices will be heard as no voice from the roof top can be ignored. I firmly believe that the voices of women with albinism have been missing and it is time to begin an engendered discussion on albinism. Persons with albinism are the most visible group of persons with disabilities, but issues about our rights are not being addressed. We are visibly rendered invisible. The absence of melanin and the visual impairments affecting people with albinism are disabling in and of themselves. I am limited to what I can do indoors. I can apply sunscreen, but the sunscreen does not render me immune against skin cancer. Corrective glasses, help where they can; but my vision will never be 100%. Mere tolerance is not enough .The world must begin to accept, embrace and celebrate diversity.
We must all adopt a vision that challenges us to ‘change how we see, and see how we change’.

June 10

THE CANADIAN COLLEGE OF MEDICAL GENETICISTS: Vancouver

Keynote Speaker

Where: Harrison Hot Springs, BC

June 7 – October 15

REDEFINING BEAUTY

Sunshine Plaza Shopping Centre Acc, Maroochydore QLD 4558, Australia

Hosted by Chromosome 18 Registry Australia

Redefining Beauty is a photographic exhibition celebrating the lives of children and adults living with rare genetic conditions including Chromosome 18, Fragile X, Vanishing White Matter Leukodystrophy and Albinisim. These stunning images were captured at various iconic Sunshine Coast locations by internationally renowned Rick Guidotti, founder of Positive Exposure – an innovative nonprofit arts, education, and advocacy organisation.

May 12

Atlantic Derm Conference

May 12, 2018

May 3

SUNY Downstate College of Medicine

“Art of Medicine”

A conference on the intersection of art and medicine

purpose: to fundraise to provide free healthcare at a local clinic run by SUNY downstate medical students

April 24

Pennsylvania Office of Child Development and Early Learning

Where: Kalahari Convention Center, 250 Kalahari Blvd. Pocono Manor, PA 18349

Local and State leaders will gather to learn more about early intervention services and providing inclusive environments.

 

March 29

2018 Research Conference on Diversity & Inclusion – CUNY GRADUATE CENTER

CUNY event site