Juvenile Arthritis Awareness Month

The month of July is juvenile arthritis awareness month in the United States.

Juvenile arthritis (JA) refers to any form of arthritis or arthritis-related condition that develops in children or teenagers who are less than 18 years of age. Approximately 294,000 children under the age of 18 are affected by pediatric arthritis and rheumatologic conditions.

For more information, visit the Arthritis Foundation’s Juvenile Arthritis Alliance.

Arthritis Foundation Logo
Don’t Forget to Contact the FDA Today

JA Registry Needed Now!

We need your help!

The Arthritis Foundation has been advocating for many years for the creation of a juvenile arthritis registry. A JA registry would improve the care children with arthritis receive. It would help pediatric rheumatologists make better decisions about the type of medications our children need and it could serve as an early warning system if there are unintended side effects or outcomes of JA therapies. The Arthritis Foundation testified last month at the Food and Drug Administration (FDA) recommending that such a registry be established:  http://www.arthritis.org/murphy.php

Now it is your chance to let the FDA know we want them to continue their commendable work in this area and make our dream a reality – the creation of a fully funded JA registry that would help our kids! Click here to learn more, take action and become an advocate!

Please personalize your letter with your individual story and feel free to include some or the entire letter which can be downloaded here.  Please submit your comments either by regular mail or email by July 14th to:
Division of Dockets Management
(HFA-305), Food and Drug Administration
5630 Fishers Lane, rm. 1061
Rockville,  MD 20852
Or
Submit electronic comments to http://www.regulations.gov/fdmspublic/component/main?main=SubmitComment&o=09000064809306d1
All comments should be identified with: Docket No. FDA-2009-N-0145

I must admit that when I first heard of this proposed registry, I was a little reluctant to support it – based on privacy concerns. But I had done quite a bit of research on autoimmune illnesses as a whole during the past few weeks, and one of the things that stood out to me was researchers talking about the importance of such registries in their endeavors.

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Arthritis Song By Chris Kirby

I am sitting here on this Sunday afternoon rubbing my hands together, literally, trying to lessen their pain. So it was with much joy that I read arthritisfriend’s blog post Guitar Strings and Joint Pain: Musician Chris Kirby Changes His Style.

Don’t miss this post, don’t miss the lyrics, and don’t miss listening to the song (there’s link at the bottom of the post).

“Hands, don’t you quit me so easily
You don’t even know
Though you’ll never need me
Don’t go

I’m losing my hands
Years by the hourglass
So don’t tell me not to be scared
Until you play by the rules
Of heroes and fools
And lose
And be no better for it”

Arthritis Song
Chris Kirby

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Creativity, Disability, And The Arts

Design for Disability

alternative ways of making
May 26 – August 23, 2009
NIAD (National Institute for Art and Disabilities)
551 23rd Street, Richmond CA 94804

An exhibit showcasing alternative art making methods and new tools inspired by them. This exhibit was made possible through a collaboration between NIAD Art Center, the studio artists who work there, and two graduate design students from the California College of the Arts.

For more information please visit www.niadart.org.

Creative Growth
Oakland, CA USA
Creative Growth Art Center serves adult artists with developmental, mental and physical disabilities, providing a stimulating environment for artistic instruction, gallery promotion and personal expression. Artwork fostered in this unique environment is included in prominent collections and museums worldwide.

Creativity Explored
San Francisco, CA USA
We are a nonprofit visual arts center where artists with developmental disabilities create, exhibit, and sell art.

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Disability And Inclusion Research

“There are strong arguments for encouraging disabled people to become designers and for finding mechanisms to support architects who acquire disabilities during their working lives. We feel this is an important step towards creating a climate of success for disabled designers in the UK.”
-Sandra Manley of the School of the Natural and Built Environment at UWE.

The Royal Institute of British Architects (RIBA) and the University of the West of England (UWE) have launched a research study into disability and inclusion in architecture.

This is the first time that a detailed piece of research has been commissioned into this subject. The year-long study will seek to identify case studies of good practice in the profession, which facilitate equal opportunities for disabled people as entrants, students and practitioners. These case studies will act as a resource for future work, as well as raising the profile of disabled architects and celebrating existing successes.

RIBA and UWE hope that the questionnaire will be completed by the following groups of disabled people;

  • architects,
  • students of architecture,
  • people who embarked on an architecture course or career in architecture but did not complete,
  • people who considered a career in architecture, but were deterred from pursuing this ambition.

The researchers are also interested in hearing from anyone who is interested in the research and considers that they can make a useful contribution.

Further details about the research and the questionnaire are available on the following website: https://environment7.uwe.ac.uk/projects/riba.

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