The Impact of Advocacy for Spinal Cord Injury

Perhaps nothing gets the attention of the general public more than advocates willing to put themselves out there in the limelight for a cause. One young man in the United States lays it on the line every year with a team in the Chicago Marathon to raise funds for chronic spinal cord injury research through his charitable foundation called SCISucks. Mr. Geoff Kent is the catalyst for making extraordinary changes in the (business as usual) philosophy to cure spinal cord injury. His SCIS Foundation is based on 4 basic principles.

Truth – The public knows very little about the true nature of spinal cord injury (SCI). This disconnect between public understanding of the condition and the suffering of the severely disabled reduces the urgency with which we seek a cure. SCIS seeks to reveal the uncensored truth about SCI and its side effects. By educating about the public health emergency of paralysis and correcting incorrect information often disseminated by the disabled community itself, SCIS hopes to advance and empower cure research.

Cure – Spinal cord injury cure research is critically underfunded. SCIS aims to channel your charitable donation directly to the most promising researchers with as little overhead as possible. We have no paid employees and donate directly to the laboratories of the top researchers with the goal of moving curative therapies to clinical trial as soon as possible.

Quality of Life – SCIS supports and encourages all quality of life initiatives including disabled sport, outdoor activity and travel. However, we promote these activities delicately, as we acknowledge that only some of the spinal cord injured community can participate due to differing levels of disability. SCIS believes that it is incumbent upon the most able of the paralyzed community to advocate on behalf of the most disabled.

Equality – The disabled community is probably the most discriminated against minority in today’s society. The stats (75% unemployment rate, 25% below the poverty line, 20% with a college education) do not lie. SCIS supports any initiatives that aim to reverse the embedded disadvantages and prejudices that the disabled face in today’s society. With or without a cure to spinal cord injury, SCIS seeks a society free of discrimination, barriers and exclusion so that both able-bodied and disabled can realize their potential for happy, fulfilling lives.

The SCIS announces strategic partnership with U2FP (Unite 2 Fight Paralysis)
It is with great excitement that Spinal Cord Injury Sucks, NFP announces that it has partnered with Unite 2 Fight Paralysis to create their new Scientific Advisory Board (SAB) and Advocate Research Committee (ARC).These are an extremely important addition to SCI cure science because these two entities will have a mandate for identifying and advancing promising therapies to cure chronic spinal cord injury. U2FP has pioneered interactions between the SCI community and SCI researchers with its annual Working 2 Walk conference. This tradition continues with the creation of this world class SAB. The scientists and global community advocates that constitute the board have been carefully selected to produce transparent, critical analysis of the most promising cure science for the SCI community. This will better enable individuals or organizations like SCIS to direct charitable dollars to the best labs to get them the funding they so desperately need.

In order to learn more about U2FP, please visit their website or consider attending the annual Working 2 Walk Science and Advocacy Symposium to learn more about cure science, advocacy and the new SAB and ARC!

The partnership between SCIS and U2FP began four years ago when SCIS board members attended their first Working2Walk Symposium and every one that followed. The relationship between the two organizations has grown over this period, as U2FP distinguished itself as a non-profit organization that is serious about tackling the difficult task of solving spinal cord injury. This is not an organization with high paid executives or a website that proclaims the joys of paralysis. It is just a NFP with an executive board comprised of impassioned “cure warriors” with skin in the game, and the desire to address this disconnect between the community of patients that need the cure, and the scientists who will produce the cure. SCIS is proud to be a part of this effort via the creation of the new Unite 2 Fight Paralysis SAB and ARC.

http://www.scisucks.org/

This entry was posted in Advocacy, Chronic Spinal Cord Injury Research, Unite 2 Fight Paralysis and tagged , , , , , , , , , , . Bookmark the permalink.