That art exhibit was featured this past summer on CBS Sunday Morning showing portraits of children battling rare disease.
Max’s portrait was painted by Sara Breslin who is an art consultant at Sheldon Fine Art Gallery in Newport, Rhode Island.
Beyond the Diagnosis is the brainchild of Patty Weltin and her Rare Disease United Foundation. The art work is a travelling exhibit being shown at medical schools, research institutes and hospitals around the to look “beyond the diagnosis” to the patient.
The latest addition of Max brings the face of Noonan Syndrome to the forefront as well as the need to pass #curesnow.
Noonan syndrome is a type of RASopathies
RASopathies are a group of genetic syndromes caused by germline mutations in genes associated with the Ras/mitogen-activated protein kinase (MAPK) pathway. Some of the RASopathies include neurofibromatosis type 1, Noonan syndrome, Noonan syndrome with multiple lentigines, capillary malformation-arteriovenous malformation syndrome, Costello syndrome, cardio-facio-cutaneous syndrome, and Legius syndrome.
Today, the American Health Care Act (aka TrumpCare) is being voted in Congress. The bill needs 215 votes to be approved. It is likely that no Democrats support it, meaning that only 21 Republicans can vote against the bill and it can still get approved.
PANDAS, or pediatric acute-onset neuropsychiatric syndrome, links the sudden onset of OCD or tic-like symptoms to streptococcal-A (GABHS). Could this mysterious affliction be a rare disease or not a disease at all?