January 9
Penn State Children’s Hospital; Grand Rounds
Hershey, PA
Calendar
Past Events
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.
December 7
First Year Med Student Lecture: Rick
University of MN
Heading to Minneapolis now.
Fun wild day tomorrow:
University of MN
8:30 Genetic Counseling student lecture
10:15: Med student lecture with grad student & Pearls ambassador Rachel. (Register for Pearls and Check out Rachel’s blog)
11:45: Shoot with new Pearls ambassador
12:30: Adobe Corp Presentation
Stay tuned for lots of pics!!
December 3
Come and celebrate the International Day of Persons with Disabilities: The UN Link
POSITIVE EXPOSURE in the FAROE Islands
MEGD, which is the umbrella organization for 24 member organizations of people with disabilities and chronic diseases, is again celebrating this year’s International Day of Persons with Disabilities. The event will be held in the Nordic House in the Faroe Islands on December the 3rd at 3pm. At the same time this will be the opening of a special photo exhibition.
Information about MEGD: www.megd.fo
The photo exhibition, titled “CHANGE HOW YOU SEE, AND SEE HOW YOU CHANGE”, is a result of the collaboration between MEGD and the renowned and award winning photographer Rick Guidotti, who visited the Faroe Islands in September 2018. The purpose of his visit was to take photos of people who daily live with some kind of challenge. The 31 photos in the exhibition in the Nordic House is a direct result of his visit in September.
The exhibition will hopefully, also through personal stories, create conversations and possible discussions about how we see each other as human beings. And further more, there is a wish to change how people normally, or often, see people living with challenges, who may look different because of disability, illness or other challenges.
Information about MEGD and their work: www.megd.fo
The event is free of charge and everyone is welcome.
Exhibition Premiere: Community based in the Faroe Islands in collaboration with MEGD Organization.
International Day of Persons with Disabilities
Exhibition will premiere at the Nordic House, Faroe Islands
Heading back to the Faroe Islands today!
Spent a week photographing some amazing new friends here in the Faroe Islands in September. Heading back for the exhibition launch CELEBRATING International Persons with Disabilities Day on December 3rd at the Nordic House.
Stay tuned for pics!!
The Set Up: November 29/ The Nordic House. Thank you TEAM Nordic House the exhibition looks AMAZING!! Tonight is opening night!!!
The Exhibit:
HAPPY International Day of Persons with Disabilities
November 9
XP Family Conference: Wichita, KS
Lecture & Photography: Rick
XERODERMA PIGMENTOSUM
Also known as XP, is a rare inherited disease affecting both males and females. It causes a person to be extremely sensitive to the damaging effects of ultraviolet radiation. Undiagnosed and untreated, Xeroderma Pigmentosum can lead to the early onset of skin cancer and blindness. In addition, approximately 20% of people with Xeroderma Pigmentosum also develop progressive neurological disease.
The Xeroderma Pigmentosum (XP) Family Support Group exists to improve the quality of life for people with XP and other diagnosed UV light conditions. The Xeroderma Pigmentosum Family support group strives to create awareness and educate the public about XP, as well as to raise funds to promote research, create collaborations with international XP partner organizations, and provide family grants for UV protective equipment and travel assistance for attending the annual XP national convention.
November 6
SUNY DOWNSTATE MEDICAL SCHOOL
Lecture to 1st Year Medical Students: Rick November 6
November 3
ALD Connect Family Conference
Courtyard Marriott Philadelphia Downtown, 21 N Juniper St, Philadelphia, PA 19107
Lecture and Photography: Rick
What is ALD?
Adrenoleukodystrophy (ALD) is a progressive, genetic disease that affects the adrenal glands, the spinal cord, and the white matter (myelin) of the nervous system. ALD is considered a rare disease, and affects approximately 1 in 15,000 people worldwide.
ALD Connect: Our mission is to improve health outcomes for patients with X-linked adrenoleukodystrophy (ALD) by empowering patients, raising awareness, and accelerating the translation of scientific advances into better clinical care.
November 1
de Young museum: Golden Gate Park \ 50 Hagiwara Tea Garden Drive, San Francisco, CA 94118 \ 415.750.3600
SPECIAL SCREENING: ON BEAUTY with Joanna Rudnick
POSITIVE EXPOSURE in Sweden
Our FREYA!!!
Positive Exposure was invited to Sweden by Ann Nordgren, MD, PhD, a Professor of Clinical Genetics at Karolinska Institute and senior consultant and Project Manager at the Karolinska Center for Rare Diseases (KCRD) at Karolinska University Hospital in Stockholm. Dr. Nordgren learned about Positive Exposure upon meeting Rick in 2015 at the Coffin Lowry Syndrome Foundation conference in Wellington, FL. At that time, the idea of a Positive Exposure in Sweden collaboration was discussed — and it finally came to fruition this year!
The Research Team at Karolinska Center for Rare Diseases (KCRD)
The whirlwind of activity began in Stockholm with a photo shoot of researchers at the Rare Disease Research Lab at Karolinska University Hospital, one of Europe’s premier health facilities. This was followed by a Positive Exposure: Seeing Beyond Diagnosis presentation and a photo shoot with Ambassadors living with unknown rare diseases as well as their families in conjunction with the Wilhelm Foundation.
Founded by Helene and Milkk, parents to Wilhelm, Hugo and Emma who passed away from an undiagnosed degenerative brain disease in their youth, the Wilhelm Foundation is devoted to seeking support to help children with undiagnosed brain diseases. With an estimated 500 children in Sweden, 27,000 in Europe and 21,000 in the USA currently living with undiagnosed brain diseases, Helen and Milkk are on a mission to spread awareness. As they explain, “When our children were still alive, we visited or sent samples to doctors worldwide, but nobody could help our children. Knowing that there are many families that will go through the same ordeal as us – where medical doctors cannot explain what is wrong, or in worse case scenario, where the child dies from a disease that nobody can identify and where nobody can help the child survive – has led us to want to help these families. We live to help the children who live today with undiagnosed brain diseases.”
After spending time with this incredible community in Stockholm as well as exploring the possibility of a Positive Exposure Exhibition at the Fotografiska Museum, we flew to the west coast of Sweden for a Positive Exposure presentation and photo shoot at Ågrenska House and Foundation. Located on Lilla Amundön, an idyllic island in Gothenburg’s picturesque archipelago, century-old Ågrenska conducts research and provides programs for children, teenagers and adults with rare diseases, their families and professionals supporting the family. Since 2005, Ågrenska has also been home to the National Competence Center for Rare Diseases in association with Rare Diseases Sweden.
As one can imagine, the two days spent at Ågrenska were beyond amazing! And it turns out that serendipity came into play as two cousins to our Executive Director, Liz Matejka-Grossman, attend Ågrenska and just happened to participate in the photo shoot too — unicycle and all!
The purpose for photographing and gathering stories from researchers, ambassadors and families in both Stockholm and Gothenburg is to create an exhibition that captures the human spirit as well as connects one person to the next. This unique exhibition will show the human side of the scientists in the room by sharing a little bit about themselves while also explaining what led them to become a researcher in their particular field of interest. Likewise, the exhibition will enable Ambassadors and their families to talk about life from their perspective — their likes, their dislikes, their favorite rock band — in addition to discussing the positive impact of KCRD, Karolinska University Hospital, the Wilhelm Foundation and Ågrenska.
Meet Freya, our newest PEARLS Ambassador:
October 26-27
4th Annual DDX3X Family Conference
- The Science History Institute
315 Chestnut St, Philadelphia, PA 19106
Keynote and Photography: Rick
About DDX3X
-Is caused by a spontaneous mutation at conception; nothing either parent did caused their child’s condition
-Primarily affects girls due to its location on the X-chromosome, though there are affected boys
-Was only recently discovered in 2014
-Has only been identified in about 200 individuals, however, doctors believe it is the cause of 1 to 3 percent of all intellectual disabilities in females
-Is often misdiagnosed as autism spectrum disorder, cerebral palsy, Rett Syndrome, Dandy Walker Syndrome, or a generic developmentally delayed label
-Is linked to intellectual disabilities, seizures, autism, low muscle tone, abnormalities of the brain, and slower physical developments
-Has a broad spectrum—some children learn to speak in full sentences while others are nonverbal; some individuals run, jump, and even ski while others are unable to walk
DDX3X Foundation: Our mission is to connect families, resources, and the medical community to advance research for a cure to DDX3X gene mutations.
Our ultimate goal over the coming years is to accelerate brain function in individuals affected by DDX3X through advances in gene therapy and pharmaceuticals.
October 18
Lecture to the Genetic Counseling Graduate Students: Rick
The Joan H. Marks Graduate Program in Human Genetics at Sarah Lawrence College.
Integrating education, healthcare, and humanism, this celebrated program prepares genetic counselors to work in a growing, dynamic field.
The mission of the Human Genetics program is to improve health care for all people by educating genetic counselors so they are prepared to meet current and future needs of their clients, their communities, their profession, and society at large.
Established in 1969, the program was the first of its kind in the United States. It remains the largest graduate program in genetic counseling in the world.
October 16
October 16
POSITIVE EXPOSURE’s great friend, Jonathan Hansen, is honoring us on October 16th at his gallery in NYC.
If you’re in town, please come as our guest.
Jonathan writes:
For the final evening at the Ideal Glass Studio on Tuesday October 16th from 6-8pm, I am hosting a private viewing of the Series in honor of POSITIVE EXPOSURE.
Rick and I have been friends for years and the release of my new work became the perfect opportunity for us to explore our mutual interest in the ideas of beauty, freedom, captivity and inclusion.
Hope you can make it…!
x,
Jonathan.
The viewing will take place on Tuesday October 16th from 6-8pm
Ideal Glass Studio
22 East 2nd Street NYC
PLEASE COME AS OUR GUEST:
RSVP: liz@positiveexposure.org
About Jonathan’s work:
The series of nine works, fabricated from Calacatta marble, industrial resin and mounted on architectonic bronze, transcend categorization, in their blending of vernacular forms of furniture, the permanence of sculpture and topographies of architecture.
BNP Paribas Asset Management’s (Brussels) Diversity Week
Positive Exposure Exhibition: October 16 till November 6.Positive Exposure, Belgium was invited to participate in BNP Paribas Asset Management’s (Brussels) Diversity Week. Our own Bieke kreps, DDS, MSc gave a workshop on “Equity & Inclusion” and we placed one of our “Change How You See, See How You Change” exhibitions within their office space.
According to Bieke, the workshop was interactive with discussions ranging from hiring someone based on his/her skills and contributions rather than just to say you have hired someone who has a difference, to staring or ignoring vs. truly seeing a person, and the importance of talking to children and young people about celebrating difference—how adults can role model inclusive behavior, to help shape the future of our world. The best outcome of the workshop was when one person said, “It would be good if we could get to a point where the word ‘diversity’ wasn’t necessary and that BNP no longer needed a Diversity Committee or week.” Bravo! We couldn’t agree more!
PE Exhibition, 2018: BNP Paribas Asset Management, Brussels
Children of BNP Paribas Asset Management employee, looking at their new PE Book!
October 13, 2018
ACCESS Ridgewood Fashion Show 2018
October 13, 2018
Kids and young adults of varying abilities and differing abilities model side by side in a fabulously inclusive environment. Siblings / friends are encouraged to model as well. Volunteers are always available to escort a model. It is a wonderful opportunity for our kids to have a fun day and express their amazingly unique selves. The fashion show is one of the highlights of the ACCESS Ridgewood weekend – a town-wide differing abilities awareness event.
Our models come from all over the Tri-State Area & more!!
August 18 – March
EXTENDED!!!!!!!! POSITIVE EXPOSURE Community based exhibition and continuous screening of FRAME Films in collaboration with A Children’s House for the Soul!
Austin Hall, Musician
Watch “Grip on Me” Music Video:
Sometimes It Hurts by Allison Whitaker
September 25
Announcing our partnership with NYU Langone & The OUT Foundation
Exhibition and Presentation; Positive Exposure Team
Our Transgender Community collaboration with NYU Langone
Positive Exposure collaborates with NYU Langone, to better inform the medical clinicians and the general public about the valuable and beautiful stories of our friends in the transgender community. On September 25th, we celebrated this project in partnership with the OUT Foundation at The HUB at Lululemon on 5th Ave., in NYC. What a party it was! We shared a sneak peak at our revolutionary film, which is a platform for our friends to voice their stories and their perspectives. We were joined that night, by the amazing Dr. Rachel Bluebond-Langer and Dr. Lee C. Zhao, along with some of the film’s stars including, Wendy, Allison, Aiden, Tyric, Sydney and Leah, Nathan, Danielle, Gaines and Jack.
“Everything is the way it should be.” –Wendy
“I’m vibrant. I’m visible. I’m here. I’m Lasso. –Lasso
“I am supposed to wake up and be comfortable in my own skin.” –Allison
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