26 January 2013

Send an email to support our Italian friends in their fight for cure

Chronic Spinal Cord Injury/is a form of torture. Fight with us for a cure!

When we campaign in America for more focus on CURE from the Christopher and Dana Reeve Foundation, our Italian friends are always with us.

When we campaign in California for more spending to CURE chronic spinal cord injury, our Italian friends respond in droves.

When we appeal to the Rick Hansen Foundation for more transparency in their spending on CURE for chronic spinal cord injury, it’s our Italian comrades who help make our numbers remarkable.

NOW, the Italians need to us to support their efforts to make CURE a priority. You can repay their support by sending a simple email.

On 9 January, the president of the Italian Paralymic Committee, Mr. Luca Pancalli stated on RAI’s (Italian Broadcasting Corporation’s) TG1 that…

“If I could live life again I would include my accident (which left him a quadriplegic . Happiness is wanting exactly what you already have.”

In response to this insulting statement made by a public personality, Ms. Loredana Longo, spokesperson for the Sruotiamoci CURE paralysis movement wrote a letter to Mr. Pancalli condemning his statement as counterproductive to cure research as it falsifies the daily suffering of those living with spinal cord injury.

In my opinion as StemCells&AtomBombs, this is not simply about the crude statements made by a public figure, but about the media's constant refusal to portray the reality of paralysis and of our voices for cure.

Under the banner “Chronic spinal cord injury is a form of torture”, Italian cure activists are demanding that RAI give them the right of reply to show the reality of spinal cord injury. In Ms. Longo’s own words, “To show that aside from living life from a wheelchair, we are forced to urinate from a catheter, use invasive methods to empty our bowels, and are subject to the effects of liver damaging drugs.”

In just two short days Italians have sent over 150 emails to RAI to back up their demands for a right of reply.

You can help them by doing the same. Please send your email by completing the below fields.

This campaign has now ended. Thanks for all the support. It was tremendous and it caused RAI to agree to an interview to the main organizer in Italy. More to follow.

18 January 2013

Send an email to stop threats against the California Institute of Regenerative Medicine

-Go immediately to the bottom of this blog to send your email or send after you finish reading -

What is the California Institute of Regenerative Medicine(CIRM)?
In a nutshell, CIRM funds research to cure diseases with regenerative medicine.
The work of CIRM is very important to us – regenerating the spinal cord means we can walk again.
CIRM is currently funding three studies for spinal cord injury totalling $6.3 million.

Who runs it?
Currently, the final vote for funding goes to the board of directors called the Independent Citizens Oversight Committee (ISOC) which is a 29 member panel of experts. In this group of experts patient advocates are also included. Patient advocates are people like me and you who are suffering from spinal cord injury (and other diseases) and our families who fight to cure us.

What’s the threat?
A very negative study:  “Committee on a Review of the California Institute for Regenerative Medicine: Health Sciences Policy; Institute of Medicine”. While it has no power on its own, the study could be used as a basis for new laws attacking the program.

The study objects to the Independents Citizens Oversight Committee on two counts:

1.     The concern is that because some board members work for colleges, they may use their votes to benefit their parent organizations.  It says: “They make proposals to themselves…regarding what should be funded. They cannot exert independent oversight.”

That is not true.

Members of the governing board NEVER “make proposals to themselves”. They are prevented by law from so doing. They may not even give input on projects which would benefit their parent organizations.

2.     And most importantly, it objects to patient advocates on the board. “…The committee believes that personal conflicts of interest arising from one’s own or a family member’s affliction with a particular disease…can create bias for board members…”—Section 3-page 14)

In other words, patient advocates are automatically biased, because we are fighting to cure our loved ones or ourselves.

This attitude disrespects patient advocates and patients everywhere. It implies that we are so caught up in our own suffering that we cannot be trusted to make a rational decision. This is not only insulting, but could make board participation virtually impossible.

Consider:  an estimated 100 million Americans (one in three!) suffer a chronic disease or disability. All of these people have families.  That’s pretty much everybody— should weall be disqualified?

What does Committee on a Review of the California Institute for Regenerative Medicine recommend?
 “The board…should not be involved in day-to-day management. (It) should delegate day-to-day management responsibilities to the President…” –section 3, page 11

Sounds harmless at first—but what they mean by “day-to-day management” is deciding who gets the money.  Giving grants for stem cell research is what the program is all about. Deny that authority to the board of directors, and they might as well go home.  

Who would make those decisions now, instead of our 29-member board, and the public?
Two people.

The Senior Vice President and the President…decide on a final slate of proposals (of research projects) to submit to the ICOC for a “yes” or “no” vote on the entire slate.
…the ICOC… should NOT (emphasis added) be empowered to evaluate individual applications…..”)— Section 4, page 18

Trying to evaluate the California stem cell program without patients and patient advocates is like studying women’s issues – but only allowing the men to speak.

What can you do about it?
We all know that the voices of patient advocates are essential to running a proper system to cure disease including spinal cord injury.
You can send an email objecting to this study’s recommendations on removing the power of patient advocates from the board of directors.

Let’s make sure our voices are not silenced!

This campaign has now ended. Thanks everyone for their support.