Rare Disease Report

Max Portrait of a Rare Disease Artist as a Young Man

OCTOBER 04, 2016
James Radke, PhD
As we have attested to before, Max Schill is one of rare diseases’ best advocates.

He is the face for #curesnow.

His artwork fills the Senate halls.

He has talked with 87 Senator offices about getting new legislation passed.
Max is in grade 2.

And he now has a portrait in the art exhibit ‘Beyond the Diagnosis’.
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.

The video below by Youreka Science explains RASopathies.

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