Spinal Cord Injury Association of Illinois
A Chapter of the United Spinal Association
November 2016
November 29, 2016 is 

SCIA appreciates all of our donors, sponsors, and supporters this year. 

If you are thinking of making an end of year charitable donation, please consider SCIA. Its easy to donate from our website via paypal,   Donate here.

Another way to support SCIA is by using AmazonSmile, and it doesn't cost you a penny! Simply use the go to smile.amazon.com, select Spinal Cord Injury Association of Illinois, and Amazon will donate 0.5% of all your purchases to SCIA. 
We appreciate each and every one of you! Thank you for supporting us!

My Kinda Party 
Saturday, February 18, 2017
If you are interested in sponsoring our country themed event, please contact us at sciinjury@aol.com
Hope to see you there!

Bank of America Chicago Marathon
October 8, 2017
We are already looking for runners for the 2017 Bank of America Chicago Marathon. We have guaranteed entry spots available for those interested in running for our charity and committing to fundraising a minimum of $1,000 for SCIA. Registration begins October 25-November 29. Contact us at sciinjury@aol.com for more information about joining our team.
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Calendar of Events

Saturday, February 18, 2016: 
Crystal Grand Banquets, Lemont, IL
Contact us at sciinjury@aol.com if you are interested in sponsoring our event.
Winter Benefit:  My Kinda Party
More details to follow!!

For Sale 
1999 Ford E150 customized van
 88,000 miles, wheelchair lift, 6-way power driver seat, reduced effort steering, hand controls, remote start, and more
Asking $9,000

Mobility Scooter For Sale 
Selling a Drive Medical Scout Compact Travel Power Scooter, 4 Wheel + Large Rear Basket for Pride Mobility Scooter
Less than one year of use, 
good condition!
Scooter price= $ 500 & Basket price: $40
Contact Maria at

Fully Accessible House For Sale
Beautiful Accessible home in Batavia, IL with accessible bathrooms, kitchen sink, closets, and elevator

Medical Equipment For Sale 
  (reduced to $2,500 

DRIVE MEDICAL 13240 PATIENT LIFT (reduced to $700)

RECK MOTOMED LEG/ARM CYCLE, VIVA 1 (reduced to $2,500)
Cell: 847-651-6007

 You Can Support SCIA, and it won't cost you a penny!
Are you an Amazon shopper? Amazon will donate 0.5% of the price of your purchases to Spinal Cord Injury Association of Illinois whenever you shop AmazonSmile.   Visit  www.smile.amazon.com/ch/36-3149036 and select SCIA as your charity of choice. Its easy and won't cost you a penny!
SCIA is a member of the Combined Federal Campaign, an employee giving program. Campaigns are currently going on, so ask anyone you know who works for the federal government, including your mail carrier or anyone in the military, to consider designating SCIA as the recipient of their contributions. Our ID number for federal government employees is 48552. 

*Remember SCIA when making any memorial contributions or honoring birthdays, weddings, graduations, or other special occasions. Contact us for memorial contribution envelopes.
Good To Know
News From New Mobility

Walking monkeys have flooded the news media since Nov. 9 - and we aren't talking about post-election memes. Two partially paralyzed rhesus monkeys are ambulating after scientists decoded data from their motor cortex signals and sent it wirelessly to an implanted epidural stimulator that "told" the paralyzed leg to move in a walking fashion. It's pretty fascinating, but when might it be available for humans?


Inclusion Eye Candy

An integrated California dance company leads a flashmob-style performance at Venice Beach: pop music, bubblegum colors, life on wheels fully represented. [Totally safe for work video.]

Three Free and Useful Smartphone Apps

The Parking Mobility app gives you something kind of awesome: the power to easily document and report vehicles parked illegally in accessible spots. The best part: If you are in a partner community, the information goes to law enforcement officials, who review the violation and issue a ticket if warranted. Let it be known that we are NOT encouraging you to spend your entire holiday shopping time reporting parking jerks ... but if you do, send us your righteous yet humorous stories! Also covered: the "MS Buddy" app and a Medicaid eligibility app.  

Online Fitness Videos Make Exercising Easier for Wheelchair Users 

Every Body Fitness offers hundreds of exercise videos led by people with disabilities and narrated by a physical therapist, who instructs and motivates you through routines designed for different abilities. Whether you're looking for strength training, aerobic exercise or yoga, you'll find accessible options starting at $25/per month. 

Apple cider vinegar, an ancient remedy, may offer benefits for wheelchair users, including treating stubborn yeast infections of the skin, clearing phlegm, helping with IBS and constipation, and leveling blood sugar for those  prone to diabetes . Inexpensive and safe, it is worth a try for these and other conditions, according to our writer with MD.

Abilities Expo: The Place to Try a Wide Variety of New Equipment

If you've never been to an Abilities Expo, you are missing one of the greatest opportunities to try adaptive products, learn about accessible travel and recreation and mingle with a knowledgeable disability community. It's happening Dec. 2-4 in the D.C. Metro Area, and coming to many other regions in 2017.

A Message from 
National Coalition for Assistive & Rehab Technology

CRT Stakeholders and Friends,

As we prepare to celebrate this important holiday, we wanted to take a minute and wish you a sincere Happy Thanksgiving.

We are very thankful for all your support and assistance throughout the year collectively fighting to protect access to CRT.  It's not easy finding time for advocacy, but your participation is critical and is paying off.

We also are very thankful to those Members of Congress, their staff, and other policy makers who are "getting the CRT message" and doing their part to help.

Of course we can't pass up an opportunity to remind you to use  www.protectmymobility.org to send your Members of Congress a Thanksgiving message to stop the January 1 cuts to CRT wheelchair accessories.


P.S. If you know of other CRT stakeholders who would like to receive these types of updates please have them sign up at the  NCART website
Surgery that Restores Hand and Elbow Function in Quadriplegics is Underused, Loyola Hand Surgeon Reports

MAYWOOD, IL - A surgery for quadriplegics called tendon transfer can significantly improve hand and elbow function, but the procedure is greatly underused, according to an article in the journal Hand Clinics by Loyola Medicine hand surgeon Michael S. Bednar, MD, FAAOS.
In the procedure, muscles that still work are redirected to do the jobs of muscles that are paralyzed. Depending on the extent of the spinal cord injury, tendon transfers can enable a patient to grasp objects, pinch, open the hand and straighten the elbow. The patient can, for example, propel a wheelchair in the snow, use a fork without splints, grip a fishing pole, shake hands and perform daily activities such as dressing, bathing, toileting and transferring to and from a wheelchair.
"Although the long-term outcomes of these procedures are good, few patients eligible for these procedures actually have them performed," Dr. Bednar wrote.
Dr. Bednar has performed tendon transfers on about 60 patients, and is among the most skilled and experienced surgeons in the country doing the procedure. Dr. Bednar is a professor in the department of orthopaedic surgery and rehabilitation at Loyola University Chicago Stritch School of Medicine.
When quadriplegics were asked what function they would most like restored, 75 percent said hand function, followed in order by bowel and bladder use (13 percent), walking (8 percent) and sexual performance (3 percent), according to an earlier study cited in Dr. Bednar's article. However, only 14 percent of patients who are surgical candidates wind up getting tendon transfers, according to another previous study.
Patients who stand to benefit most from tendon transfers have spinal cord injuries in the C5-C8 cervical nerves in the lower neck. Patients must not have acute or chronic medical conditions such as infections, pressure sores, medical instability or spasticity.
"A good surgical candidate has functional goals, is motivated, understands benefits and limitations of surgery, demonstrates emotional and psychological stability/adjustment to disability and is committed to the post-operative rehabilitation process," Dr. Bednar wrote.
Skeletal muscles come in pairs - one muscle to move the bone in one direction, another muscle to move it back. Muscles are connected to bones by tendons. The bone moves when the brain sends a signal down a nerve telling the muscle to contract.
In many cases, more than one muscle performs the same function. So in a tendon transfer, the surgeon shifts the tendon of one of the spare muscles to a new location. For example, the surgeon may detach one of the working elbow muscles (the brachioradialis) and reattach it to a nonworking muscle that flexes the thumb (the flexor pollicis longus).
The number of functioning muscles a patient has will determine what tendon transfers the surgeon will perform. The more working muscles available for transfer, the more functions can be restored.
Tendon transfers typically involve two surgeries on each arm, performed three months apart. Arms are done one at a time. During rehabilitation, patients learn how to use the transferred muscles.
Tendon transfers temporarily reduce hand and elbow function during recovery and rehabilitation. Tendon transfers also do not restore full function. But while pinch strength and grasp strength after rehabilitation are not as high as in a normal hand, they are high enough to perform most activities of daily living.
Among the reasons so few patients get tendon transfers are lack of communication among rehabilitation specialists, physicians and surgeons, poor access to care and lack of awareness. The greatest barrier appears to be a lack of coordinated collaboration among specialists, Dr. Bednar wrote.
Dr. Bednar concluded: "Continued education of patients with tetraplegia, their caregivers and the rehabilitation community will hopefully increase utilization of these effective tendon transfer procedures." (Tetraplegia is another term for quadriplegia.)
Dr. Bednar's paper is titled "Tendon Transfers for Tetraplegia."

ACTION ALERT: Voice Support Provisions for 
21st Century Cures Act
United Spinal's policy department has some exciting news to report. The 21st Century Cures Act will be coming to a vote Wednesday, November 30th for a vote in the House of Representatives.   You can take action and support United Spinal's priorities that are moving in Congress right now!
The U.S. House of Representatives will vote on Wednesday, November 30th and the Senate will vote on it next week.  You can take action by contacting your member of Congress today and early tomorrow morning to voice your support.  You can find your representative here.
Specifically, United Spinal would like you to contact your Member of Congress in support of a few Roll on Capitol Hill priorities which we have been taking the lead in supporting:
·    Language has been added to extend the current delay in Medicare cuts to CRT power wheelchair accessories  and seating systems (such as tilt and recline systems and specialized seat cushions) to July 1, 2017 (one-year extension was going to originally expire on December 31, 2016, now there is a 6-month extension) - Section 16005.
·     Establishment of a Director at the Centers for Disease Control and Prevention and in co-ordination with other agencies to track neurological diseases  (SCI is included in this categorization) to be known as the National Neurological Conditions Surveillance System -Section 2061.
·     Improving Medical Rehabilitation Research at the National Institutes of Health - a director-level position will be created at the National Institutes of Health to develop a comprehensive plan  for the conduct, support, and coordination of medical rehabilitation research -  Section 2040.
See attached word doc for more information! 
In addition to contacting your representative, we would love for you to reach out to members of the House Energy & Commerce Committee and Senate Health, Education, Labor & Pension (HELP) committees to voice your support.  Attached you will find a list of the members who currently sit on these committees. Please let me know if you have any questions and we appreciate all the hard work you do! 

Wheel:Life + Comfort Medical Partner with the Woody Foundation to Serve Quadriplegics

Wheel:Life and  Comfort Medical are thrilled to announce our new partnership with the Woody Foundation in an effort to better serve quadriplegics across the US.  If you are a quadriplegic or have a spinal cord injury that has caused you to have limited hand dexterity, we invite you to 
Thanks to our new partnership, Woody Packs also include the opportunity to  request a variety of catheter samples that are specifically chosen for people with limited hand dexterity, as well as all of the free books that Wheel:Life offers on the topics of fundraising, accessible travel and relationship advice.

Primary Care Provider Resource

Not only do patients with spinal cord injury (SCI) require the usual health management services of community-based primary care providers (PCPs), but it is also essential for PCPs to consider the unique medical complications secondary to SCI in their health care practice.


This website is an auxiliary resource for medical professionals only and offers general considerations for managing patients with SCI, including common secondary medical complications.

for information.

Clinical Trials 

United Spinal is assisting Asterias to secure clinical research participants for its SCiSTAR study. The study has been vetted and approved by our Medical and Scientific Advisory Committee. We appreciate you sharing this information with your members as applicable. They will be seeking participants through December. Please review the attached information and links and additional information provided below.
Doctors are actively seeking participants for a clinical research study to evaluate three increasing doses of AST-OPC1, an investigational agent for people who recently suffered a cervical (in the neck) spinal cord injury (SCI). All doses of the investigational agent must be administered at a single point in time between 14 and 30 days after injury. Use our interactive prescreener to determine if someone you know may qualify to participate in the study.
FREMONT, Calif. - Sept. 14, 2016 - Asterias Biotherapeutics, Inc. (NYSE MKT: AST), today presented positive interim efficacy data from the 10 million cell cohort in the Company's ongoing AST-OPC1 SCiSTAR Phase 1/2a multicenter clinical study in complete cervical spinal cord injury patients. While early in the study, with only 4 of the 5 patients in the cohort having reached 90 days after dosing, all patients have shown at least one motor level of improvement so far and the efficacy target of 2 of 5 patients in the cohort achieving two motor levels of improvement on at least one side of their body has already been achieved. Patient improvements are being measured by the ISNCSCI neurological classification scale widely used to quantify functional status of patients with spinal cord injuries. As suggested by existing research, patients with complete cervical spinal cord injuries that show two motor levels of improvement on at least one side may regain the ability to perform daily activities such as feeding, dressing and bathing.
Here is some additional information regarding their study FYI: 

Personality and Adaptation to Spinal Cord Injury:
A message from York St. John University

Thank you for your recent involvement in our project looking at perfectionism and adaptation to spinal cord injury. Below is a summary of the project, including our main findings that we hope will be of interest to you.

We ran the study because we wanted to find out how attitudes towards making, hiding and admitting to mistakes influences how people adjust and react to spinal cord injury.

150 people with spinal cord injury took part. 103 from the community and 47 in a hospital. 72% were male, 50% married, an average time since injury of 10 years and 57% paraplegic injury.

A fear of making mistakes in public is troublesome for people adjusting to spinal cord injury both in hospital and in the community. Carers and medical staff should aim to produce an environment that does not stop people from trying things because of fearing making a mistake. 

What did we find?
  • Regardless of time since injury and type of injury, people's attitudes towards making mistakes in public were more important in predicting adjustment to life with a spinal cord injury.
  • Four common types of reactions were feelings of numbness, anxiousness, depression and anger.
  • The three types of behavior were predicting these reactions were
    • Presenting an image of that everything is fine and actively telling people they do not need help
    • Avoiding situations involving performing a task in front of others that you may fail at.
    • Never admitting to mistakes.
  • The most harmful type of behavior was advoiding tasks or performances where personal short comings or mistakes could be visible.

Help Stop Medicare Cuts to Complex Rehab Technology Critical to People with Disabilities

Medicare is planning to cut funding on January 1, 2017 for specialized wheelchair systems needed by people with complex disabilities. There is legislation in Congress, H.R. 3229 and S. 2196, with strong bipartisan support that will prevent these funding cuts and thereby protect access for the people who rely on this specialized equipment each day. Congress must take action now to stop these Medicare cuts. Read more HERE.


United Spinal wants to better understand how SCI persons utilizes Tele-health applications. They are interested in very general information such as:
  • How often you have used Telehealth in the past year
  • What your experience has been (good, bad, or indifferent)
  • Any examples of how it contributed to your health improvement
United Spinal would like to use this information in a roundtable discussion with the members of our Corporate Advisory Council to illustrate the importance of this technology for our community.

Please respond to Nick at nlibassi@unitedspinal.org
SCI Support Groups: 
For those who are injured and their families. 
Advocate Christ Medical Center
Spinal Cord Injury Peer Support Group
4440 W. 95th Street
Oak Lawn, IL 60453
Support Group Resumes in March
Community Room- Rm 0111B
Ground Floor of Outpatient Pavilion 
next to  Guest Services 
Contact  Mercedes Rauen at SCIA
708-671-1808 or sciinjury@aol.com

Marianjoy Rehabilitation Hosptial
Lives In Motion
26W171 Roosevelt Road
3rd Floor Gym
Wheaton, IL 60187
Support Group Resumes in March
Contact Monica Blaauw for meeting dates and locations

Rehabilitation Institute of Chicago at Homewood
1055 W. 175th Street, Homewood, IL 60430
Meets 4th Wednesday of the month at 6:00pm
Contact Mike Thompson at fishin67@gmail.com
or  Brenda Canning at 312-238-1137

SCI Support Group Rockford IL
Van Matre Rehab Hospital
950 S. Mulford Road 
Rockford, IL 61108
Outpatient Gym
Contact Gemma Fletcher gemma.fletcher@healthsouth.com
Meets the second Wednesday of each month @ 6:00pm

S.C.I.P Support Group
Champaign, IL Area
Contact:  Jeff Brinkley jeff@scipgroup.org
Hope Clinic Support Group
3137 Woodward St
Springfield, IL
Contact Christie Davis for more information

SCIA Board of Directors

                                        President Steve Burns                                                               
Vice President  Beth Gorman                    
      Secretary  Stacy Berendt

          Treasurer  Patricia Genardo

William Bogden
Patricia Collins
Colleen Glucksmann
Stephanie Krakauer, PT
Annie Krueger
Sarah Milcarek
Patricia Mucia
Jurate Neuman
Mike Pigoni
Chirag Shah, M.D.

Medical/Scientific Advisory Board
Roy Adair, M.D.
William Adair, M.D.
David Chen, M.D.
Michelle Gittler, M.D.
Jeffrey Oken, M.D.
Lawrence Vogel, M.D.

Mercedes Rauen, Executive Director
Kimberly Houston, Administrative Assistant

The SCIA newsletter is an informational resource only.  SCIA neither endorses nor recommends services provided by any of the sources listed therein. 
SCIA Newsletter edited by Kimberly Houston.
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