13 April 2011

Italian IV National Day for Persons with spinal cord injuries

The will of the people inexplicably ignored
By Paulo Cipolla

First, it should be pointed out that the original idea to establish a National Day, was born from the need for clarity regarding the real chance to walk again felt by people living with spinal cord injuries.

It is clear that the only way to walk again is to help researchers. Therefore a practical way is to give economic support to Italian research and disseminate correct information about paralysis from spinal cord injury. It was for this reason that a national day dedicated to finding a cure for spinal cord injury was established, as also is the case for years many other diseases.

To accomplish this, the Tuttinpiedi (All Stand Up) Committee was formed in 2004.

To promote this, the Tuttinpiedi Committee, with over 20,000 people across Italy spontaneously joining, was formed in 2004 (it should be noted that the collection of membership was suspended because it had gone well beyond what was necessary).

The Committee Tuttinpiedi represented the will of the people to address and solve the problem of identifying a cure for spinal injuries.  In fact, the primary purpose of the Tuttinpiedi Committee was to establish the National Day for Research on Spinal Cord Injury.

The FAIP (Federation of Italian Paraplegic Associations) faced with such a popular initiative could not ignore this phenomenon, which until then it had seemed strange, decided to support it.

In 2008, the national day was finally establish, but: 
a) The popular will of the Tuttinpiedi Committee was to establish a Day of National Research on Spinal Cord Injury.
b) The FAIP establishmed the National Day for Persons with Spinal Cord Injuries, but the word research, the heart and soul of the popular will, was deleted.

The result is that today, in 2011, medical research on spinal cord injury in Italy seems abandoned and the people who believed a change would come with the establishment of a national day see their expectations thoroughly disregarded each day.

On April 4, 2011 many of us noted that:
 In no definably important news or TV program was the fourth anniversary of the National Day for Persons with Spinal Cord injuries even mentioned.
 In none of the events related to the national day was the topic of research for a cure for spinal cord injury even put on the agenda.

For example, In Milan, at the Spinal Unit Niguarda Hospital, organized a conference entitled:
"The UN Convention on the Rights of Persons with Disabilities: a step forward for spreading the culture of independent life"

I pointed out the disappointment that the topic of research had been totally neglected, ignoring the will of the more than 20,000 people who wanted a national day for research on spinal cord injury.

Because of this brief protest I was labeled as: "An example of a person who has not reintegrated into society after a spinal cord injury."

Frankly I do not care of this.

If you share my disappointment and want share your ideas with me, you can contact me via e-mail at paolo.cipolla(@)yahoo.it

Perhaps in future we might think of a way to reassert the original spirit of the day to what people with spinal cord injury would have wanted: "A day dedicated to the research for a cure for spinal cord injuries."

Translator: Dennis Tesolat
lunedì 11 aprile 2011 CelluleStaminali&BombeAtomiche: IV Giornata Nazionale della Persona con Lesione al Midollo Spinale

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