What We're Up To
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
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 Read More »
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)
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 Read More »
POSITIVE EXPOSURE will be collaborating 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 Read More »
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 will be attending the red carpet global premiere of AUTISM in FRAME! The Paparazzi will be there!!!!! Venue: Berwick Theater and Center for Community Arts (110 E Read More »
University of Minnesota’s Pediatric Dermatology department applied for a grant to collaborate with POSITIVE EXPOSURE to create a community based exhibition that will be a permanent exhibition at their new beautiful Pediatric Dermatology Clinic. AND IT WAS SUCCESSFUL!!!!! We will be in Minneapolis photographing April 27 & 28 with the exhibition installation projected to follow Read More »
Keynote Presentation and Photography About HealtheVoices: Website Social media continues to shape the way patients and caregivers make decisions about their healthcare, and online patient advocates are at the forefront of this movement. Patient advocates are driven by a passion to help others, but it is evident that there is a lack of emotional, financial Read More »
Speaking to students during their Disability Awareness Week @ Kingsborough Community College!
Delhi, India Ill be in Delhi 20-26 March working in collaboration with the Wilhelm Foundation and The Institute of Medical Genetics & Genomics, Sir Ganga Ram Hospital, photographing local families that have undiagnosed conditions. This global initiative will create community among the undiagnosed families so they dont feel so isolated and alone. There will be an International Undiagnosed Read More »
Rick and the film team are traveling to Houston this weekend to create: A FRAME Film The Psychological and Social impact of living with a skin condition like Alopecia, Vitiligo, Ichthyosis etc.. In collaboration with the Children’s House for the Soul and The Health Museum. We will be working with our ambassadors featured in Houston’s Read More »
On my way to Minneapolis today to speak to 0ver 100 Orthodontists and over 300 staff. A 2.5 hour presentation of POSITIVE EXPOSURE, FRAME and PEARLS with a dental twist!!!!!
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!!
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!! Read More »
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 Read More »