Tag Archives: worldwide

Scoliosis Awareness

Scoliosis affects 2-3% of the population, or an estimated 7 million people in the United States, and there is no cure.

Scoliosis impacts infants, adolescents, and adults worldwide with little regard to race or socio-economic status. The primary age of onset for scoliosis is 10-15 years old, occurring equally among both genders. However, females are eight times more likely to progress to a curve magnitude that requires treatment.

Scoliosis can impact the quality of life with limited activity, pain, reduced respiratory function, or diminished self-esteem.

The vast majority of people with this condition are not expected to require treatment. The problem is we do not know who will get it, why they get it, which will progress, or how far they will progress. Each year scoliosis patients make more than 600,000 visits to private physician offices, and an estimated 30,000 children are put into a brace for scoliosis, while 38,000 patients undergo spinal fusion surgery.

Despite physicians trying to treat this spinal deformity for centuries, 85% of the cases are classified as idiopathic. Consequently, a scoliosis patient’s life is exacerbated by many unknowns, and treatments therefore that are often ineffective, invasive, and/or costly. Scoliosis patients also have increased health risks due to frequent x-ray exposure.

Scoliosis is a multifactorial disorder, which requires multidisciplinary research and treatment.

For more information please visit The National Scoliosis Foundation’s website

Rare Disease Day

Rare Disease Day

Rare Disease Day takes place on the last day of February each year.

The main objective of Rare Disease Day is to raise awareness amongst the general public and decision-makers about rare diseases and their impact on patients’ lives.

The campaign targets primarily the general public and also seeks to raise awareness amongst policy makers, public authorities, industry representatives, researchers, health professionals and anyone who has a genuine interest in rare diseases.

Since Rare Disease Day was first launched by EURORDIS and its Council of National Alliances in 2008, thousands of events have taken place throughout the world reaching hundreds of thousands of people and resulting in a great deal of media coverage.

The political momentum resulting from Rare Disease Day also serves advocacy purposes. It has notably contributed to the advancement of national plans and policies for rare diseases in a number of countries.

Even though the campaign started as a European event, it has progressively become a world phenomenon, with the USA joining in 2009, and participation in a record-breaking 84 countries around the world in 2014. We hope many more will join in 2015. Some countries have decided to raise rare disease awareness further, for example, Spain declared 2013 as the National Year for Rare Diseases.

The objective is for the World Health Organization to recognize the last day of February as the official Rare Disease Day and to raise increasing awareness for Rare Diseases worldwide.

On rarediseaseday.org you can find information about the thousands of events happening around the world to build awareness for people living with a rare disease and their families. If you are planning an event, you can register your event details on their Post your Event page to get your event listed on the site.

New York Updates the Handicap Symbol

You see them in parking lots, bathrooms, license plates and public transportation. It’s easily recognizable, yet most don’t think about them too much. It’s the handicap symbol, and in New York it’s getting a fresh look after 45 years.

What started as an illegal art project in Rhode Island by Sara Hendren and Brian Glenney soon transformed into a movement for change recognized by the government. Their original idea was to liven up the “stiff, robotic” look into a more active and human looking symbol. The message is to get away from presenting the look as a disAbility, and rather show that it is still a person in the chair who is still moving forward.

Inspiration for Mobility
An attempt to change the symbol in 1994 was proposed but failed. However, it did succeed as the inspiration for the new design, which was built on a grass-root platform spreading awareness through the right routes to reach real change. The biggest adopter so far is the state of New York, which signed the change into law by Governor Andrew Cuomo. In addition, NFL team Jacksonville Jaguars, the Boys and Girls Club in South Boston, and the Museum of Modern Art had all also updated their handicap logos to the new look.

The language of the symbol is also making a change. Using the word accessible now rather than handicap presents a more positive light on the symbol and thought process alike. The specific look of the logo now has the person leaning forward with arms back and wheel accented to appear spinning so that the overall appearance shows motion.

Handicap Symbol Represents Movement
No movement comes without concerns however, and the main issue presented with the Accessibility Icon Project is that it resembles an athlete and doesn’t represent the disabled as a whole. Though true from this perspective, the designer Sara Hendren pushes to move the focus away from a literal interpretation to its symbolism. The movement is not solely about a new look, but brings attention for us to take action and rethink disAbility in society.

Only time will tell if the project will gain national or even worldwide change. What is known though is that it starts conversations and gives people a new way to look at those different around them.