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Home > Paralysis Support > Featured Resources

Featured Resources Library 

 

July- 2014


Stem Cells, The Good, the Bad, and the Ugly
 

We have written several articles in the past few years about stem cells and their potential as therapeutics for spinal cord injury (SCI).  There is still confusion about stem cells and recently there has been some good, bad, and downright ugly information coming to light.

The Good.  One of the good things about stem cells is that they are not all the same.  Different stem cells have different capabilities.  For example, embryonic stem cells have the potential to become any type of cell in the body, including nervous system cells.  Mesenchymal stem cells, however, are much more restricted in the types of cells they can become, and they may be much better suited for secreting chemicals that reduce inflammation.  There are two US companies that are working very hard to safely and appropriately test stem cells in FDA-regulated clinical trials for SCI.  Asterius Biotherapeutics recently acquired the embryonic stem cells products, intellectual property, and clinical data from Geron Corporation, which was conducting a phase I clinical trial in acute SCI and stopped a couple years ago for economic reasons.  Asterius is now interacting with the FDA to begin a different clinical trial in SCI.  StemCells Inc. is testing the safety and efficacy of a fetal central nervous system stem cell product.  They are targeting early chronic SCI and The Miami Project will become a site in their upcoming phase II trial.  One really important component about these 2 products is that the cells are very strictly purified and characterized before they are injected into people; we do a very similar process with our Schwann cell products and we cannot stress enough how important it is to do such a rigorous process.

The Bad.  One of the bad things about stem cells is that they have been over-hyped by the media in regard to their readiness for treating multiple diseases.  As a result, stem cell tourism has become a lucrative yet unethical business worldwide.  No stem cells have been proven to be effective therapies for SCI, therefore everything is still experimental and carries with it significant risk – hence it is extremely unethical to charge people money for unproven, risk-filled therapies.  Very commonly, mesenchymal stem cells are sold as treatments for multiple diseases, including SCI.  The term mesenchymal stem cells can be confusing because there are actually many different sub-types of cells that are collectively referred to as “mesenchymal stem cells” and they are not all good for therapeutics.  There is an increasing push for developing definitions and standards for mesenchymal stem cells (see Nature 25 July 2013 volume 499 page 389).  The Miami Project supports the position statement published in 2009 by the International Campaign for Cures for Paralysis.  “We do not rule out the possibility that cellular therapies may improve function and quality of life for recipients and justify the risks, but insist that the onus is on the providers to deliver such proof from a valid clinical-trial program.” We believe that it is unethical to sell unproven therapies and we do not advice people with spinal cord injuries to participate in such treatment procedures.
 
The Ugly.  The ugly thing about unethical people selling unproven, unregulated stem cell products is that innocent people get hurt.  Many negative effects go unreported, but we know they happen.  In 2011, the German government shut down the XCell-Center because a young boy died as a result of treatments they sold.  In 2012, 60 Minutes presented a huge expose on stem cell fraud.  And just recently, a case report was published in the Journal of Neurosurgery: Spine revealing a large tumor-like mass that developed inside the spinal cord of a person who had olfactory mucosa tissue transplanted into the injury site by the highly controversial Carlos Lima in Portugal.  Olfactory mucosa tissue contains a large variety of cells, not just the olfactory ensheathing cells that are much better studied as a potential therapeutic.  The mass was discovered 8 years after the transplantation. 

The bottom line is that stem cells as potential therapeutics for SCI is indeed a very exciting field.  However, it is extremely important that the cells be characterized very carefully, that cell processing standards be refined and followed, that the cells are tested in proper clinical trial settings with extensive follow-up and long-term monitoring, and that we truly identify the benefit associated with different types of stem cells.

 

 


 

 

May- 2014

May 2014 is National Mobility Awareness Month

National Mobility Awareness Month (NMAM) utilizes the National Mobility Equipment Dealers Association network of members to educate the United States and Canada populations on how people with disabilities can live active, mobile lifestyles.  They would like your help in spreading the word as they look for three Local Heroes to receive free wheelchair accessible vehicles.  A Local Hero can be anyone in your community—a caregiver, veteran, or person with a disability—who volunteers, educates, advocates, achieves, or perseveres.

Did you know?
• Over 18 million people in the U.S. and Canada have mobility issues
• People with disabilities constitute the largest minority group in the United States and the only group anyone can become a member of at anytime
• One in five elderly have mobility issues
• There are mobility equipment manufacturers, dealers and certified driver rehabilitation specialists in your community dedicated to improving the lives of people with disabilities
• Automotive mobility solutions are available for people with disabilities, enabling them to enjoy active, mobile lifestyles

NMEDA is a non-profit trade association of mobility equipment manufacturers, dealers, driver rehabilitation specialists, and other professionals dedicated to improving the lives of people with disabilities through the use of mobility solutions and wheelchair accessible vehicles

 


 

 

March- 2014

International Perspectives on Spinal Cord Injury

The International Perspectives on Spinal Cord Injury  is a new report created by collaboration between the World Health Organization, the International Spinal Cord Society, and Swiss Paraplegic Research.  The aims of the report were to:

• Bring together the best available information on SCI worldwide, particularly regarding epidemiology, services, interventions, and policies
• Reflect the lived experience of people with SCI across the life course and throughout the world
• Make evidence-based recommendations for action 


The main recommendations of the report are:
1. Improve health sector response to SCI
2. Empower people with SCI and their families
3. Challenge negative attitudes to people with SCI
4. Ensure that buildings, transport and information are accessible
5. Support employment and self-employment
6. Promote appropriate research and data collection

 


 

September- 2013


Disability Service and Product Showcase

United Spinal Association/National Spinal Cord Injury Association hosts the Disability Service and Product Showcase.  Whether you are looking for a disability service or product that you need or just looking to add to your wish list, DSP Showcase is the right resource.  DSP Showcase has product and service listings from both mainstream and niche manufacturers and distributors.  You can contact any of them directly from any listing page.

Categories include:
•    Aids to daily living
•    Exercise
•    Health and hygiene
•    Accessibility
•    Wheelchairs and scooters
•    Adaptive vehicles and driving
•    And many, many more

 


May- 2013

 

SCI Webinar Archives
United Spinal Association/National Spinal Cord Injury Association hosts a free webinar series each month focused on topics important to spinal cord injury (SCI).  Each webinar is presented live and then the video is kept online as well as a text transcript of the webinar.  Recent topics include:

• Ensuring Quality Services & Supports Under Medicaid
• Air Travel & the TSA
• Getting the Right Mobility Equipment &  Services
• Tax Provisions
• Cutting Edge Fitness

There are over 25 topics already archived and available for your resource needs.  You can also sign-up to receive notifications of upcoming webinars.

 


 

January - 2013

Knowledge in Motion 
The New England Regional SCI Center has developed an online archive of consumer-focused lectures and webcasts as part of its ongoing educational program.  These educational programs provided the SCI community an opportunity to hear directly from leaders in the field of spinal cord injury research, rehabilitation, treatment, and quality of life n terms easily understood by those without a medical or scientific background.


NERSCIC also created the SCI Guide as the first of its kind to give the SCI community a place to find and recommend the best websites on SCI.  As nothing can take the place of the experiences of other people with SCI, these sites are chosen by you, for you. When you find a great online resource, use the SCI Guide to spread the word and let other people know. You can recommend a new site or review any site listed any time. To be listed, websites have to offer high quality information and resources that can be accessed directly online for free by anyone in the country.

 


 

October/November - 2012


Model Systems
 

The Model Systems Knowledge Translation Center for spinal cord injury, traumatic brain injury, and burn has created a new resource for individuals living with SCI and their families and friends.  The resource is a guide for obtaining employment after SCI.  Information included addresses:


•    Why work is important for individuals with spinal cord injury (SCI)
•    Laws that protect individuals with SCI who seek work
•    What vocational rehabilitation is and how it works
•    How vocational rehabilitation is funded
•    How to balance work and benefits
•    How to benefit from volunteering


The Spinal Cord Injury Model Systems (SCIMS) are funded by the National Institute on Disability and Rehabilitation Research (NIDRR). The Spinal Cord Injury Model Systems are called "model systems" because they are national leaders in SCI-related care and research.  Currently, there are 14 SCIMS centers across the United States (including here in Miami); each center provides the highest level of comprehensive and multidisciplinary care from point of injury through rehabilitation and full community re-entry. In addition to these 14 centers, the Spinal Cord Injury Model Systems Data Center directs the collection, management, and analysis of a longitudinal national SCI database.
  


 

March / April - 2012


Rehab Solutions – FES Technology & Paralysis
United Spinal Association/National Spinal Cord Injury Association hosted a FREE webinar on Functional Electrical Stimulation (also known as FES). Discover how FES has helped thousands of people get through rehab faster, improve their mobility, and reclaim their independence. What is FES? FES sends small electrical pulses to paralyzed muscles to get them working again. It can be used to help someone exercise, breath, grasp, transfer, stand, walk, and even avoid pressure sores. Is It Right For You? Here’s your chance to find out! Learn the basics behind Neurotechnology. Get wired into the latest research findings and how they are making a difference for people recovering from spinal cord injuries, strokes, and other neurological disorders. Identify new rehabilitation and healthcare options that could open the door to a more healthy and active lifestyle. All the tools you need are right here. Presentation handouts for the session, “Rehab Solutions: FES Technology and Paralysis” are also available.

 


 

November / December - 2011

Users First Alliance – Empowering the Wheelchair Users

We all know the struggles, and sometimes impossibilities, of getting the correct mobility equipment for our specific needs.  It often comes down to reimbursement policies and lack of funding.  Well, the UsersFirst Movement is all about demanding more choices as consumers and expressing our individual abilities.  UsersFirst advocates for greater access to appropriate wheelchairs, mobility scooters, and seating systems for people with disabilities.  UsersFirst fights for people with disabilities to have access to mobility equipment that’s right for them, so they can live the lives they choose.  We all know there is strength in numbers; your voice can make a difference!


 

 

October - 2011

Stem Cells: Hype, Hope, Progress

The Spinal Cord Injury Network held a pilot workshop "Stem Cells: Hope, Hype and Progress" in partnership with the Spinal Injuries Association and Stem Cells Australia in July 2011. More than 80 people attended the event in Brisbane, which brought together health professionals, researchers, and people with spinal cord injury. The workshop aimed to update the community on research into cellular therapies and educate them on stem cell tourism.

A series of videos from the workshop can be viewed from their website.

 

 


 

May - 2011

European SCI Federation

A group of 25 SCI consumer organizations representing 24 countries in Europe have networked together to form the European SCI Federation (ESCIF), an umbrella organization with the vision of providing a stronger voice on key issues important to improving the quality of life for all people with SCI.  They are doing this by promoting the exchange of information, knowledge, and experience irrespective of what county you live in.  They are now beginning to form a Global SCI Consumer Network to further their reach.

One of the key resources they have already created is about Unproven Therapies, particularly stem cell therapies.  Individuals with SCI have investigated these “treatments” and put together the information presented on the ESCIF website as a resource for all people living with SCI.

 


 

April - 2011

Parking Mobility
Ever get tired of people illegally parking in the disabled parking spots?  Parking Mobility is a community-based non-profit organization which brings citizens and their cities together to address disabled parking abuse.  They believe that the best individuals to report disabled parking abuse are the individuals who need disabled parking for their daily activities.  The Parking Mobility application empowers private citizens to report a violation with 3 quick and simple photos.  The report is immediately sent to the city, and the city tickets the vehicle using the violation report.  When the city collects the fine, your favorite charity receives 20% of the fine!  And your city not only improves accessibility for its citizens, it collects a fine that it would not have received without Parking Mobility and you!

 


 

March - 2011

No Barriers Summit 2011

Every couple years, in a naturally beautiful and challenging setting, the international No Barriers Summit brings together adventurers and outdoor enthusiasts as well as scientists and innovators for an outdoor summit unlike any other. The No Barriers Summit combines hands-on clinics, product demonstrations, nature excursions, films, art and music, keynote addresses, leadership exercises, and a scientific symposium.


This Summit will give people who live with challenges the technologies and techniques needed to help them live more active lives.

 

Each day is about sharing, partnership, inspiration, discovery, exploration, and accomplishment. Here, you’ll meet people like you -- people who let themselves dream big and are invested in creating a bold vision for tomorrow. No Barriers Summit's replace our perceptions about disability and personal challenges with a renewed belief in what is possible and what will be in the future.

 


 

January - 2011

Understanding Spinal Cord Injury

Understanding Spinal Cord Injury, part of a new DVD series, will be available in February 2011 to help educate individuals and families about their new spinal cord injury and options for post-trauma care.

 

Narrated by Judy Fortin, former CNN anchor and medical correspondent, the video features some of the nation's top neuroscientists, physicians, and spinal cord injury experts to help people understand their new injury, the path to recovery, and functional expectation. Learn more, or pre-order your copy at
www.spinalinjury101.org.

 


 

December - 2010

New Edition of the Miami Project Male Fertility Guide

The male fertility research group has updated the Male Fertility Following Spinal Cord Injury: A Guide for Patients .The guide was originally published in 2000 and, thankfully, there have been many advances since then. This booklet provides information about changes in male sexual function and fertility that may accompany spinal cord injury (SCI), and outlines the options available to deal with such changes. It is our hope that the information contained in this updated edition of our booklet can be used as a talking point for individuals and their medical professionals.

 


 

November - 2010

Assistive Technology (AT) Network

The AT Network website has been revamped! This website is designed for consumers, caregivers, service providers, and others involved with assistive technology. The four main sections of the website address:

1. Law & Advocacy – where you can learn about federal & state AT laws and your rights to assistive technology devices and services.
2. How to – has information about how to find AT, fund AT, and use it to succeed in life.
3. Find it now – is a resource-rich page with several web search tools to help you find new and used devices as well as services in your community.
4. News and Events – allows you to keep up with the latest news about assistive technology, AT Network events, and training opportunities provided by the AT Network and its members.

 


 

September - 2010

Guide for Sexuality and Reproductive Health
The Consortium for Spinal Cord Medicine has recently published a new guide, Sexuality and Reproductive Health in Adults with Spinal Cord Injury. Though this guide was written to help clinicians provide accurate information about how spinal cord injury (SCI) impacts sexual function, it is very easy to read and is an excellent resource for people living with SCI. This guide provides information on physical and practical considerations, the effects of injury on sexual function, responsiveness, and expression, treatments for dysfunction, fertility information, and relationship issues.

 


 

August - 2010

Consumer Guide for Bladder Management
The Consortium for Spinal Cord Medicine has recently published a new consumer guide, Bladder Management Following Spinal Cord Injury: What You Should Know. Bladder management is an important component of living successfully with SCI. No one management program can work for everyone. Injury levels vary, as do the effects of nerve trauma on bladder function. There are many factors involved in establishing your bladder management program, and males and females often have to consider different options. Lifestyle issues are also factors affecting your choice.
This guide will help you work with your health-care team to develop a program that best suits your living situation; one that you feel comfortable with; and, most important, one that protects your health, independence, and quality of life.

 


 

July - 2010

International Society for Stem Cell Research (ISSCR)
We have all heard about the extraordinary promise that stem cell research holds for the treatment of human diseases. Clinics all over the world claim to offer stem cell treatments for a wide variety of conditions. But are all of these treatments likely to be safe and effective?

The ISSCR provides information to help you evaluate these claims. Read on to become an instant expert!

 


 

May / June - 2010

Impact of Health Care Reform on People with Disabilities
The disability community has worked together tirelessly for more than a year to achieve health care reform. After health care reform nearly died several times, Congress revived it and it finally became law in March 2010. The question is what does it really mean for people living with disabilities?

United Spinal Association and the National SCI Association’s public policy collaboration have prepared an analysis of how the new law interfaces with disability. They have highlighted improvements and described problems that still exist. Read on to become an instant expert! 

 


 

April - 2010 

Spinal Cord Advocates
Spinal Cord Advocates is a website dedicated to grassroots advocacy on issues that affect people with spinal cord injury and disorders. This website is a product of the unique collaboration between two of the nation's leading nonprofit membership organizations dedicated to improving the quality of life of all Americans with spinal cord injuries and disorders - United Spinal Association and NSCIA. Our collaboration builds upon the strengths of each organization, thereby enabling us to amplify our voices, to efficiently utilize our resources, and to be more effective on behalf of people with spinal cord injuries and disorders (SCI/D).

Together, NSCIA and United Spinal:

• have more than 120 years of experience of advocacy
• represent people with SCI/D from all 50 states and more than 20 countries
• have experienced public policy staff in a joint Washington, DC office, and,
• can carry on a tradition of advocacy on behalf of veterans with SCI/D.

The true strength of this collaboration can only be realized through a grassroots network of people who have SCI/D, or are interested in issues related to people with SCI/D and mobility impairment. In other words, we need you! Health care reform, research funding, Social Security, Veterans issues, stem cells, accessibility, access to wheelchairs and other durable medical equipment are topics discussed here, pretty much anything that's of interest to you!

 
 
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