Positive Exposure On The Road

June 2019

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.

 

June 27

June 21-23

POSITIVE EXPOSURE Photography, workshop and presentation!

June 17

June 8

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