Raredr

Max – Portrait of a Rare Disease Artist as a Young Man

James Radke, PhD
Published Online: Tuesday, Oct 04, 2016
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.
 





Latest Articles
eSight eyewear is the Star Trek like device that allows legally blind 13-year-old, Ethan LaCroix, the ability to play basketball with the Harlem Globetrotters
The 2017 Neuro Film Festival awarded William T. Doorley with the Neuroscience Is…™ Essential award for “Work in Progress: The Remarkable Journey of Dr. Warden.”
Brineura (cerliponase alfa) is an enzyme replacement therapy that in just a few short years has shown itself to be an effective treatment for children with CLN2 disease.
The 2017 Neuro Film Festival recently awarded Meghan Tucker with the Neuroscience Is…™ Critical award for her video, “BethAnn Telford World Marathon Challenge.”
$vacMongoViewPlus$ $vAR$