Tag Archives: paralysis research

silhouette of woman in a wheelchair looking at a sunset

September is Spinal Cord Injury Awareness Month

September is National Spinal Cord Injury Awareness Month and to help raise awareness, we put together a list of helpful resources and support groups for our friends and customers with spinal cord injuries (SCI). These resources are also helpful for families, loved ones, therapists, caretakers – and for anyone looking to contribute to a worthy cause.

National Resources for People with Spinal Cord Injury

Christopher and Dana Reeve Foundation

One of the most well-known organizations for SCI, the Reeve Foundation was founded in 1999 and is dedicated to finding a cure for spinal cord injury by funding innovative research and offering services that improve the quality of life for those living with paralysis. Further, they provide resources on health, rehabilitation, costs, and insurance, and funding to nonprofits that serve the disability community.

Website: https://www.christopherreeve.org
Contact: 800-539-7309

United Spinal Association

A national 501(c) (3) nonprofit membership organization, United Spinal is dedicated to enhancing the quality of life of those living with spinal cord injuries and disorders. United Spinal transforms the lives of people with SCI/D by:

  • Advocating for greater access to healthcare, mobility equipment, public transportation, rehabilitation, community services and supports, and the built environment
  • Empowering our members with resources, one-on-one assistance, and peer support
  • Promoting independence through employment opportunities and community integration of wheelchair users into mainstream society

Website: https://unitedspinal.org
Contact: 718-803-3782

Miami Project to Cure Paralysis

The Miami Project to Cure Paralysis was founded in 1985 with the help of Barth A. Green, M.D. and NFL Hall of Fame linebacker Nick Buoniconti after Nick’s son, Marc, sustained a spinal cord injury during a college football game.  The Miami Project is a Center of Excellence at the University of Miami Miller School of Medicine.  It is considered the premier investigative research program conducting cutting edge discovery, translational, and clinical investigations targeting spinal cord and brain injuries.

Website: https://www.themiamiproject.org
Contact: 305-243-6001

Travis Roy Foundation women smiling playing wheelchair basketball

The Travis Roy Foundation is dedicated to enhancing the life of individuals with spinal cord injuries and their families by providing adaptive equipment and to finding a cure through increased funding of research, resulting in self-reliance and the ability to be as independent as possible. Half of the money raised by the Travis Roy Foundation goes toward Quality of Life grants to purchase adaptive equipment to help paraplegics and quadriplegics live their lives.

Website: https://www.travisroyfoundation.org
Contact: info@travisroyfoundation.org

Triumph Foundation

Triumph Foundation is a 501(c)(3) non-profit organization whose mission is to help children, adults, and Veterans with Spinal Cord Injury/Disorder (SCI) to triumph over their disability and to inspire them to keep moving forward with their lives by pushing themselves to get better every day. Triumph Foundation works to minimize the obstacles that one faces after suffering traumatic injury.

Website: https://triumph-foundation.org
Contact: 661-803-3700

Shepherd Center’s Spinal Cord Injury 101

Videos developed by Shepherd Center, that use simple language and images of real people who have sustained a spinal cord injury, as well as medical experts and advocates. They also offer general information about SCI and TBI.

Website: www.spinalinjury101.org
Contact: 404-352-2020

SpinalCord.com

SpinalCord.com was started by Swope, Rodante P.A. to be a resource for SCI survivors and their families. Get access to more resources, such as information about new injuries, doctor/treatment centers, and legal or financial aid.

Website: https://www.spinalcord.com
Contact: 877-336-7192

Paralyzed Veterans of America

Founded in 1946, Paralyzed Veterans of America (PVA) is involved in research, resources, and legislation concerning spinal cord injuries. PVA also sponsors sporting events and programs such as the National Veterans Wheelchair Games. PVA will use their expertise to be the leading advocate for:

Website: https://www.pva.org
Contact: 800-424-8200

Spinal Cord Injury

Facebook Peer Support Groups for SCI

Often, the best way to find resources and support for SCI is to connect with others who are sharing a same or similar experience. Many communities have in-person groups where people can meet one another, but there are also opportunities to get lots of great information and some camaraderie, too, virtually with Facebook Groups. See some popular options below (click to visit).

Fundraising with Help Hope Live

We understand that sometimes, with spinal cord injury, the biggest obstacle to mobility freedom is the cost of products, technology and medical services. That’s why we partnered with Help Hope Live; to connect our community with a fundraising option to purchase the wheelchair accessible vehicle that they need.

Help Hope Live is the leading community-based fundraising platform for people with unmet medical expenses due to catastrophic injuries or illnesses. They provide the following support and advantages throughout the fundraising campaign:

  • One-on-one fundraising help
  • Customizable Campaign Page
  • Bill pay support
  • Additional benefits based on their nonprofit status, including tax deductible donations

Learn more about Help Hope Live and get started here.

AMS Vans is a leading advocate of mobility freedom for persons living with spinal cord injury, and one of the largest providers of wheelchair-accessible vehicles in the country. We offer low prices on quality mobility vehicles, affordable short- or long-term handicap van rentals, mobility equipment sales with installation, and trade-in opportunities for your current adaptive or unmodified vehicle. Explore our inventory or call us at 1-800-775-8267.

Roman’s Law Struggles to Keep CA Funding Spinal Cord Injury Research

Roman Reed Paralysis Research Funding

The Roman Reed Spinal Cord Injury Research Act, or Roman’s Law, was originally established to provide funds required for researching spinal cord injury paralysis cures. Roman’s Law puts state funds into a general fund for the University of California system, which grants select scientists the financial resources necessary for groundbreaking research into paralysis cure.

Named after Roman Reed, whose vertebrae were crushed during a college football tackle, leaving him paralyzed and ending his dreams of the NFL. Since then, he has gone on to regain use of his arms, father 3 children, and spearhead the campaign for Roman Reed Spinal Cord Injury Research Act of 1999, along with his father Don Reed, who has worked tirelessly along side his son to see this funding get passed.

Romans Law Research Funding

In the decade of Roman’s Law funding, $14 million dollars was spent on research to attempt to cure paralysis. The program brought an additional $64 million dollars in “new money” to California, mainly through matching grants from the National Institutes of Health and other sources, which equaled a 4-to-1 return on California’s investment. The breakthroughs accomplished thanks to Roman’s Law funding include:

    • 175 published papers;
    • The world’s first embryonic stem cell human trials had been begun by Geron, Inc.;
    • Two patents were pending, including a revolutionary change to the Petri dish itself, so it could sort cells and save money;
    • Robotic devices co-developed with NASA could lower the costs of rehabilitation;
    • An electronic “bridge” could join the halves of a completely severed spine;
    • A new biomed company, California Stem Cells, Inc., was formed from research Roman’s Law funded first;
    • Scientists developed more accurate ways to measure paralysis and recovery;
    • A strange-looking electronic “suit” allowed a paralyzed person to actually walk;
    • A new discovery made it possible for nerves to reconnect through the injury scar.

Roman’s Law was originally paid for by the general fund collected from state tax revenue, with $1.5 million dollars a year provided by the State of California. Recent budget cuts meant that the fund would no longer receive money from the state. New funding sources were considered after the budget cuts, and the Appropriations Committee was asked to approve a $3 traffic ticket add-on as a means of funding Roman’s Law last year. The request was turned down, with the main objection being that if a poor person received a traffic ticket and could not pay it, he or she would go to jail.

Roman Reed Press Conference

This year, the Appropriations Committee is being asked to reconsider, but instead of a $3 add-on to traffic tickets, a $1 add-on was requested. So far in 2012, that bill (AB 1657) passed the Assembly, as well as the Transportation and Housing Committee. Next stop is the Appropriations Committee (where it was defeated last year), and after that, the full California Senate, followed by the Governor’s signature. If it can get through all of that, Roman’s Law can start funding paralysis research once again.

Eight states have already passed similar bills: Florida, Illinois, Kentucky, Missouri, New Jersey, New York, South Carolina, and Alabama. Those states have traffic ticket add-on fees that range as high as $100, making the California bill seem like a very small price to ask for such an important cause.

While supporters of Roman’s Law sit and wait the verdict, what is your opinion? Should traffic ticket add-ons fund paralysis research?

Sources:
huffingtonpost.com/don-c-reed/revised-fight-for-each-ot_b_1517001.html
huffingtonpost.com/don-c-reed/the-agony-and-the-exhaust_b_1636377.html
romanreedfoundation.com/spinal-cord-injury-research-act.html

Image sources:
nctimes.com
toryminus.blogspot.com
neuroscience.stanford.edu

Medical Research

First FDA Approved Human Stem Cell Trial Begins in Atlanta

October 11, 2010 turned out to be a watershed moment in the treatment of spinal cord injuries, as Atlanta’s Shepherd Center became the first facility in the United States to host a human trial of embryonic stem cell research. In collaboration with Silicon Valley-based Geron Corporation, Shepherd Center surgeons have successfully injected the trial’s first patient with about 2 million “human embryonic stem cell (hESC)-derived oligodendrocyte progenitor cells,” also known as GRNOPC1, in the hopes that the cells will form a restorative coating around the damaged spinal cord.

“We are pleased to have our patients participating in this exciting research,” said Donald Peck Leslie, M.D., medical director, Shepherd Center. “Our medical staff will evaluate the patients’ progress as part of this study. We look forward to participating in clinical trials that may help people with spinal cord injury.”

The Geron study has been lauded by excited scientists and patient advocates alike, who have longed for stem cell clinical trials to move out of the laboratory and on to actual patients. That excitement has been intensified in light of similar testing on hundreds of rats, resulting in partially paralyzed animals regaining the ability to walk.

It should be noted, however, that although doctors will be conducting tests to see whether the treatment restores sensation or enables the patient to regain movement, Geron has clearly stated that this Phase I trial will not be aiming to cure patients. The company eventually hopes to test the cells for many different medical problems, but this first trial will focus only on testing the “safety and tolerability” of stem cells on patients with new spinal cord injuries and will involve 10 patients who were partially paralyzed by a spinal cord injury in the one to two weeks prior to their enrollment in the study.

The biggest leap forward here comes from the fact that the Geron trial is the first to have been fully vetted by a government entity. In a press release published yesterday, Thomas B. Okarma, Ph.D., M.D., Geron’s president and CEO stated that, “Initiating the GRNOPC1 clinical trial is a milestone for the field of human embryonic stem cell-based therapies.”

According to a Reuters article, Geron is not subject to limitations on federal funding for human embryonic stem cell research, because it is a privately funded company. Although it does not have government funding, what Geron does have is the very first U.S. Food and Drug Administration license to use human embryonic stem cells to treat people. The only one other company with a human stem cell treatment close to FDA approval is Massachusetts-based Advanced Cell Technology.

David Apple, M.D., Shepherd Center’s medical director emeritus and principal investigator of the trial at Shepherd Center added, “This clinical trial represents another step forward in Shepherd Center’s involvement in an attempt to find a cure for paralysis in people with spinal cord injury. Shepherd Center is an ideal place to conduct this study because of our clinical expertise and the volume of patients referred here for rehabilitation care.”

Shepherd Center, located in Atlanta, Georgia, is a private, not-for-profit hospital specializing in medical treatment, research and rehabilitation for people with spinal cord injury and brain injury. Founded in 1975, Shepherd Center is ranked by U.S. News & World Report among the top 10 rehabilitation hospitals in the nation. Shepherd is one of seven sites participating in the study and is located mere minutes from the nationwide home office for AMS Vans Vans, Inc..

For more information regarding the Geron study, the press release states:

In addition to Shepherd Center, Northwestern Medicine in Chicago, IL is also open for patient enrollment. As additional trial sites come online and are ready to enroll patients, they will be listed on the Patient Information pages of Geron’s website and on the NIH clinical trials registry, ClinicalTrials.gov. Further information on the criteria for patient eligibility for the study is also available on ClinicalTrials.gov.