April 26
Positive Exposure Events
Past Events
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
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.
Moebius Sundrome Foundation National Conference
Atlanta, Georgia
July 15-17, 2022
Positive Exposure July 16th All day
July 14-17
The National Organization for Albinism and Hypopigmentation, NOAH
Experience the Magic!NOAH’s 19th National Conference
Orlando FL July 14-17 2022
July 7-9
2022 Chromosome 18 Decoded Conference San Antonio, TX
June 23 – June 28
The International 22q11.2 Family Meeting
Hosted by the 22q11.2 Society
Le Méridien Lav Hotel in Split, Croatia – On the Dalmacijan Coast
June 26 – June 28, 2022
June 21- 23
CCD Smiles: Conference Salt Lake City
Improving the lives of people with cleidocranial dysplasia through Connections, Awareness, Research, Education and Support.
Cleidocranial Dysplasia (CCD) is a rare condition that primarily affects the development of bones and teeth.
June 11
Virtual Presentation: 10:30 EST
Overview:
Pitt Dental Medicine, in recognition of the 30th anniversary of the American Disabilities Act, and building on more than half a century of caring for individuals with special care needs, presents a three part continuing education webinar series. The course will consist of 9 hours of accredited CE Credit. This course features speakers from multiple disciplines, promoting the incorporation of special care dentistry into your practice and to highlight available community resources.
Objectives:
The objective of the course is to promote increased access to dental care for patients with disabilities through the education of practicing dental clinicians.
May 22 – June 10
At the Gallery: Call for an appointment
June 4
AADMD Annual Conference
Orlando, Florida + The Grand Opening toe the Special Olympic Games..
On the cover: Amanda Harrinauth is a Special Olympic Athlete, self-advocate and poet. Amanda will welcome everyone back on Day 2 and will deliver her latest poem.
(Image Description: Beautiful young woman with brown hair and brown skin with red lipstick, closely cropped, is smiling and looking off to the right of the camera.)
Message from AADMD President, Allen Wong:
“Let me win, But if I cannot win, let me be Brave in the attempt” is the Motto of the Special Olympics Athletes. If you read it again, it is more than just a motto but a philosophical way of thinking. It reminds us that we should be hopeful and courageous in our lives.
As President of AADMD, I intend to bring the spirit of the Athletes of Special Olympics in being hopeful and courageous in our organization’s attempt to educate, advocate, collaborate and propagate the attitude of inclusion and improved health care for all people. Injustice is wrong but not being courageous to help make improvements is worse. We cannot mend all the wrongs in life but we can certainly do our part individually and collectively.
AADMD was formed to help improve interdisciplinary healthcare, improve access to care, and help end disparity of care for people with intellectual and developmental disabilities. We invite like-minded people and organizations to join us in our cause.
May 19
Michigan Oral Health Coalition Conference, Lansing Michigan
Conference Information
Description:
The Michigan Oral Health Coalition annual conference is the place to find the latest information on oral health in Michigan. The 2022 Conference will be held May 19 and 20 at the Marriott in East Lansing. The first day, sponsored by the Delta Dental Foundation, will feature national speakers sharing best practices on dental care for people with disabilities. The second day will focus on the value of the Medicaid dental benefit to overall health as well as many innovations in oral health care.
Objectives:
- Identify 3 barriers to people with disabilities accessing dental care.
- Name 5 ways that people with disabilities can be supported to access oral health care.
- List 3 reasons why Medicaid Adult Dental Care is important to population health.
- Identify 3 actions that you can take to advocate for the proposed Michigan Medicaid Dental Restructure.
- Describe 5 Oral Health Care Innovations.
What to Expect:
The opportunity to learn the latest in oral health care innovation and a change to network and collaborate with Oral Health Advocates from across the state.
Positive Exposure presentation:
May 10
Grand Rounds with Rick Guidotti May 10 @ 12 pm & Exhibition thru June 10 @ Dartmouth Hitchcock Medical Center
(Image Description) Photograph of a gallery with images hanging on a wall, captions reads: “We are honored to host this empowering exhibit to help foster conversations that work to address stigma and ethical challenges surrounding people with genetic differences.”)
Photography exhibition at Dartmouth Hitchcock Medical Center highlights beauty of people with physical differences
Lebanon, NH – A photography exhibition highlighting the beauty of people who live with physical differences due to genetic variations is currently on display at Dartmouth Hitchcock Medical Center (DHMC). “The New Faces of Genetics and Beyond” is a portrait collection from Positive Exposure, a New York-based nonprofit organization that promotes a more inclusive world through award-winning photography, films, exhibitions, lectures and educational programs. Comprised of dozens of images hanging in the main mall of DHMC, the creators of this gallery hope to contribute to creating a more compassionate, understanding, and respectful community.
“The New Faces of Genetics and Beyond” has traveled to numerous hospitals around the United States and the world, including the Mayo Clinic in Rochester, MN, Brigham and Women’s Hospital in Boston and NYU Langone in New York City. The exhibition was brought to DHMC by Marianne L. Barthel, director of the Dartmouth Health arts and humanities program, working with William A. Nelson, PhD, MDiv, professor and director of the Ethics and Human Values program at the Geisel School of Medicine at Dartmouth, and Eleonore B. Baughan, a student at Geisel.
“Art can evoke many emotions, from joy to sadness,” Barthel said. “It can also be a tool to have uncomfortable conversations and break down stigma. Photos can give a new perspective on how we view our fellow humans. We are honored to host this empowering exhibit to help foster conversations that work to address stigma and ethical challenges surrounding people with genetic differences. Positive Exposure founder Rick Guidotti’s spectacular photography on display as part of ‘The New Faces of Genetics and Beyond’ celebrates beauty in all its diverse, magnificent forms and reminds us of our common connection: we are all human.”
The organizers have also created a series of educational events surrounding the exhibition. Some of these events include an upcoming Grand Rounds presentation with Guidotti, and a self-guided narrative medicine experience at the exhibition site developed by Kathryn B. Kirkland, MD, section chief and director of palliative care at DHMC.
“The New Faces of Genetics and Beyond” is on display at DHMC until June 10. For more information, contact Barthel at Marianne.L.Barthel@hitchcock.org or visit https://positiveexposure.org/gallery/.
Photo Caption: “The New Faces of Genetics and Beyond,” a portrait collection from Positive Exposure, is on display at Dartmouth Hitchcock Medical Center through June 10.
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Dartmouth Health, New Hampshire’s only academic health system and the state’s largest private employer, serves patients across northern New England. Dartmouth Health provides access to more than 2,000 providers in almost every area of medicine, delivering care at its flagship hospital, Dartmouth Hitchcock Medical Center (DHMC) in Lebanon, NH, as well as across its wide network of hospitals, clinics and care facilities. DHMC is consistently named the #1 hospital in New Hampshire by U.S. News & World Report, and is recognized for high performance in numerous clinical specialties and procedures. Dartmouth Health includes Dartmouth Cancer Center, one of only 51 National Cancer Institute-designated Comprehensive Cancer Centers in the nation, and the only such center in northern New England; Dartmouth Health Children’s, which includes the state’s only children’s hospital and multiple locations around the region; member hospitals in Lebanon, Keene and New London, NH, and Windsor, VT; and Visiting Nurse and Hospice for Vermont and New Hampshire; and more than 24 clinics that provide ambulatory and specialty services across New Hampshire and Vermont. Through its historical partnership with Dartmouth and the Geisel School of Medicine, Dartmouth Health trains nearly 400 medical residents and fellows annually, and performs cutting-edge research and clinical trials recognized across the globe with Geisel and the White River Junction VA Medical Center in White River Junction, VT. Dartmouth Health and its more than 13,000 employees are deeply committed to serving the healthcare needs of everyone in our communities, and to providing each of our patients with exceptional, personal care.
April 29
Image Description: A young boy against a green column, smiling into the camera.
Image DescriptionL Collage of images of young people with the words Welcome to the worldwide webinar to celebrate Undiagnosed Day April 29
Image Description: Image of 3 boys, tightly cropped on faces smiling. Caption reads: The Undiagnosed Inititiative. Aliou
Aliou is 16-year-old young man from a small village in Mali. He is a happy and kind creating lot of great energy around him. He loves breeding and playing with his goats.
June 26-28
Split, Croatia
22Q COnference
April 5
NYU College of Dentistry will host its second AHEAD Symposium — Achieving Health Equity through Access for All with Disabilities — focused on changes in policy and practice. The event will take place virtually on Tuesday, April 5, 2022, from 9:00 am to 12:00 noon EDT, and will bring together experts in the areas of health care advocacy, access, and funding at the state and federal levels for people with disabilities.
COVID-19 created new access issues in health care, but people with disabilities have faced significant barriers to receiving care long before the pandemic. To see a dentist, people with disabilities may need to find a practice with an accessible office and a provider who is willing and prepared to see patients with disabilities. Payment can also be a barrier: while more than 10 million people with disabilities are eligible for Medicaid, many dentists do not accept it due to low reimbursement rates.
“Ensuring people with disabilities have access to compassionate, comprehensive oral health care is an important health equity goal, and we need policymakers and the oral health community at the table for these conversations,” said Charles N. Bertolami, DDS, DMedSc, the Herman Robert Fox Dean of NYU Dentistry. “We’re pleased to reconvene for our second AHEAD symposium to discuss how to both increase access for this patient population and prepare the next generation of dentists to care for them.”
March 19
The James B. Edwards College of Dental Medicine
The James B. Edwards College of Dental Medicine is a strong, academically progressive, financially stable institution with a committed faculty and staff that serves a uniquely talented cohort of students and patients across South Carolina. Through academic excellence, innovation and discovery, and a commitment to serving patients with the highest level of care, we are changing what’s possible in dental education.
Community Based Photography for a Permanent Exhibition on Campus.
Image Description: Large group of students all in white coats, smiling into the camera.
March 18
University of Louisville School of Medicine
VIRTUAL LECTURE 8-9 AM EST
March 9
UNIFORMED SERVICES UNIVERSITY OF THE HEALTH SCIENCES
LECTURE
(Image description Photo 1 healthcare providers in OR environment, Photo 2 4 =uniformed service men and women standing in from of an auirforce plane)
March 1
The RFK IDDRC’s Tenth Annual Rare Disease Day Celebration
“POSITIVE EXPOSURE: SPIRIT OF DIFFERENCE”
Photographic presentation by Rick Guidotti
Rick Guidotti is an award-winning former fashion photographer who has turned his talents
to photographing individuals with genetic disorders. His photographs recognize beauty within difference and challenge the way beauty is defined. His non-profit organization, dedicated to this pursuit, is called Positive Exposure.
Please join us for a photographic presentation followed by Q&A on:
TUESDAY, MARCH 1, 2022 6:00 – 7:30 PM
https://einsteinmed.zoom.us/j/98270082150
ASL and closed captioning will be provided
This year Rare Disease Day is being sponsored at Einstein-Montefiore by The Rose F. Kennedy Intellectual & Developmental Disabilities Research Center (RFK IDDRC), The Rose F. Kennedy Children’s Evaluation & Rehabilitation Center (RFK CERC), The Rose F. Kennedy University Center for Excellence in Developmental Disabilities (RFK UCEDD), and the Einstein Student Chapter of the American Academy of Developmental Medicine & Dentistry (AADMD).
5 square portraits on left with blue, gold and white lettering. The text is above.
February 28
RARE Disease Day: POSITIVE EXPOSURE Community wide virtual presentation
February 4
Johns Hopkins University/NIH Genetic Counseling Training Program: Positive Exposure Lecture
Drawing on resources from three outstanding research institutions, the National Human Genome Research Institute (NHGRI) and National Cancer Institute (NCI) at the National Institutes of Health (NIH) and the Department of Health, Behavior and Society at the Johns Hopkins University (JHU) Bloomberg School of Public Health have collaborated to develop and support the JHU/NIH Genetic Counseling Training Program (GCTP), a competitive graduate program that addresses the growing need for genetic counseling services.
January 8
HAPPY NEW YEAR!!!!
We will be launching our FRAME Film Premiere this Saturday, 8 January 10-12 ET in 3 separate zoom webinars with Q&A. We will be recording each session and will add edited session Q&A and Meet and Greet to our FRAME platform. So exciting.. Here are the links and details…
Thrilled to be invited to submit Proposal. YAY!!
Saturday, January 8 Film FRAME Film Premiere
10:00-10:40 am EST
Film run time: 13 minutes, followed by Q&A
12:00- 12:40 pm EST
Film run time: 11 minutes, followed by Q&A
Supported Decision Making
You are invited to a Zoom webinar.
When: Jan 8, 2022 10:00 AM Eastern Time (US and Canada)
Topic: FRAME Film Premiere Supported Decision Making
Register in advance for this webinar:
After registering, you will receive a confirmation email containing information about joining the webinar.
Direct link: Register here for Supported Decision Making
Image description: FRAME in bold black letters Faces Redefining the Art of Medical Education underneath in fine black lettering, black lettering. Below, close up portraits of 3 individuals smiling an d looking into the camera, all against a white background.
Epilepsy in our Adult I/DD Community
You are invited to a Zoom webinar.
When: Jan 8, 2022 11:00 AM Eastern Time (US and Canada)
Topic: FRAME Film Premiere: Epilepsy in our Adult I/DD Community
Register in advance for this webinar:
After registering, you will receive a confirmation email containing information about joining the webinar.
Direct link: Register here for FRAME Film Premiere: Epilepsy in our Adult I/DD Community
Image description: FRAME in bold black letters Faces Redefining the Art of Medical Education underneath in fine black lettering, black lettering. Below, close up portraits of 6 individuals smiling interacting with each other, all against a white background.
Early Onset Alzheimer’s Disease in Adults Living With Down Syndrome
You are invited to a Zoom webinar.
When: Jan 8, 2022 12:00 PM Eastern Time (US and Canada)
Topic: FRAME Film Premiere: Early Onset Alzheimer’s Disease in Adults Living With Down Syndrome
Register in advance for this webinar:
After registering, you will receive a confirmation email containing information about joining the webinar.
Direct link: Register here for Early Onset Alzheimer’s Disease in Adults Living With Down Syndrome
Image description: FRAME in bold black letters Faces Redefining the Art of Medical Education underneath in fine black lettering, black lettering. Below, close up portraits of 5 individuals smiling interacting with each other, all against a white background.