This past spring, I met an Amazing Mama Bear, Patty. Patty is the executive director and founder of Rare Disease United. Their "mission is to build a strong rare disease community throughout the United States so that we may help to provide support and information to our families, raise awareness and advocate for our families." To help raise aware for rare diseases in children, Patty created the
"Beyond the Diagnosis" art exhibit.
Here is some info about this amazing exhibit dorectly from the Rare Disease United's web site:
"The Beyond the Diagnosis Art Exhibit’s focus is the rare disease patient. Artists have donated their time and talents to paint rare disease patients for this groundbreaking Exhibit. This beautiful Exhibit is traveling to medical schools, research institutes and hospitals around the globe encouraging the medical community to look “beyond the diagnosis” to the patient. With an average diagnosis time of 8 years and few treatment options, doctors and rare disease patients need to have a more engaged approach to reduce diagnosis time and improve care.
Art has been used for thousands of years to successfully convey a message, whether it be a story or a glimpse into the human spirit. At Rare Disease United Foundation, we believe art not only leaves a powerful and lasting visual imprint, but creates a unique connection for the viewer."
This week has been a very exciting week for Patty because 12 pieces from the "Beyond the Diagnosis" exhibit have gone on display at the National Institute of Health (NIH). It's also been an exciting week for us because Patty has included a beautiful portrait of Ava in the exhibit. Achondroplasia Dwarfism is considered a rare disease. The portrait of Ava was based off of a beautiful photograph of Ava that was taken by our good friend Sara Ganaway.
Here's Ava's portrait hanging in the National Insitute of Health and below it the photograph of Ava taken by our friend Sarah Ganaway. I will post close up picture of the portrait soon.
~Nancy
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