On the Ice At the United Center

On March 26, 2011, two members of the NWI SCI Group played in an exhibition sled hockey game with the RIC Blackhawks before the Blackhawks faced off against the Ducks. Here are some pictures. Congratulations Gary and Paul!

A Thank You from the Lab of Dr. Hans Kierstead

In December of 2010, the Northwest Indiana Spinal Cord Injury Group donated $2000 to the University of California-Irvine to help fund the research of Dr. Hans Kierstead. We got this thank you card in the mail in the beginning of March.

Handcycling, anyone?

Our Mission, as the Northwest Indiana Spinal Cord Injury Group, is to improve the quality of life for those with spinal cord injuries, living in Northwest Indiana; through education, advocacy, peer support, and recreational outings.

As the director of the NWI SCI Group, I would like to help further our cause by offering to go on a handcycle ride with anyone interested in experiencing handcycling.

I have two different styles... a Quickie Mach II and a Top End XLT.

I wold even be willing to loan one of my personal handcycles out for a short time as well. I find that riding gives me a feeling of freedom and independence that I don't experience in many other ways. I know the cycling season is coming to an end shortly, but there's always next summer.

Contact me at nwiscig@gmail.com or call 219-531-0055 for more information.

Let's ride!

Joe

Spinal Cord Injury Walk 2010 Outcome

The Spinal Cord Injury Walk 2010 was on September 26th, 2010. We had just over 100 participants, and raised $5600 this year.

Thank you to all who participated, donated, and volunteered. Thank you to our sponsors, Allen and Associates, Wagenar Steel, and Elegan Sportswear. Chesterton Physical Therapy, Inc. supplied water and Family Catering prepared the hot dogs and Sloppy Joes.

All of the proceeds are to benefit the activities of the Northwest Indiana Spinal Cord Injury Group, Unite 2 Fight Paralysis, and paralysis research. Donations are tax-exempt under section 501(c)(3) of the Internal Revenue Code. Tax ID# 27-1583899

Picture of the event are coming soon.

Shirts from the event are for sale for only $10 each plus $5 shipping per order.
Send sizes and appropriate donation amount to:

NWI SCIG
1052 Joliet Rd
Valparaiso, IN 46385

...or donate online at www.sciwalk.info

May Meeting and More

Hello all,

We will be meeting again on Saturday, March 6. Please email an RSVP and come on out for some free pizza and good company.

Gelsosomo's Pizzeria

1pm-?
2605 Laporte Avenue
Valparaiso, IN 46383
map | driving directions


Hope to see you there.

May's meeting will be Sunday, May 2nd... location TBA.

The following information was sent to me regarding current Spinal Cord Injury Research. Contact nwiscig@gmail for flyer attachments that can be printed as well.


----------------------------------------------------------

This is a SCI science summary prepared by Chris Connolly, Dennis Connolly, and Jon O'Connor.

Please see the attached SCI research information which updates the progress of the best researchers and independant publicly-held companies.

#1: CDRF history of spinal cord research (then & now). See ThenAndNow_newsletter1.pdf

#2: Reeve Irvine Center of primate research with Dr. Zhigang. This published and peer-reviewed nerve regeneration study is the first of its kind. The fact this is being done in a primate model is a big step from working with rats since the primate nervous system is complex and similar to ours. See ReeveIrvinePublication_newsletter1.pdf

#3: Dr. Tuszynski of UCSD who is working with chronically injured primates utilizing a combination treatment of bone marrow stem cell and growth-promoting proteins. See Tuszynski_newsletter1.pdf and Sci Res&Bioeng_newsletter1.pdf

#4: Dr. Karimi
Dr. Karimiof Toronto Canada is working on a combinational strategy for neural repair after chronic SCI. See Karimi_newsletter1.pdf

#5: Dr. Wise Young

Dr. Young is currently conducting clinical trials in China investigating the efficacy of umbilical cord blood transplants in the treatment of spinal cord injury.

Dr. Young has also been working with other leading neurosurgeons and directors of rehabilitation from across the US as well as two US companies to develop protocols for US-based human clinical trials. Preparations are being made for US Phase II trials to be initiated which will be the first human clinical trials for people with chronic injuries. These trials will help to asses the safety, feasibility and efficacy.

#6: Dr. Stephen Davies

Dr. Davies has been researching intensely for the last year plus and is currently peer-reviewing some new findings before making them public.

Dr. Davies' research focuses specifically on "1). Overcoming the effects of axon growth inhibitors found at sites of injury and throughout the environment of the injured adult central nervous system, 2) Development of glial restricted precursor derived astrocyte (GDA) technologies to generate specific types of astrocyte glia that are suitable for repairing the injured or diseased spinal cord and brain."

#7 Dr. Kerr

Dr. Kerr is currently working at Biogen, which is in Cambridge. He is also at Harvard. He has recently left John Hopkins.

Publicly held companies to keep an eye on include:

#1: Geron - out of Irvine, CA; this company has a scheduled Phase 1 human trial for the third quarter of 2010 utilizing stem cells. Hopefully this will move forward; the FDA cancelled their last scheduled trial.

www.geron.com

#2: Acorda Therapeutics - Acorda is a company based out of New York. Acorda focuses on SCI and MS predominantly. While they have some commercial stage therapies currently available for MS they are in the R&D and pre-clinical stage with a couple of therapies targeted at SCI.

www.acorda.com

#3: In Vivo Therapeutics; this company is based out of Boston and is currently petitioning the FDA for an acute human SCI trial for late 2010 or early 2011. Keep an eye on this one, very strong team.

www.Invivotherapeutics.com

Working 2 Walk 2010

Plan to join us in Phoenix for the 5th Annual Working 2 Walk Science & Advocacy Symposium, November 11-13, 2010. Featuring the latest research news from our leading scientists, hands-on advocacy workshops, and community networking opportunities, W2W is a unique event that you won't want to miss. After 3 years in Washington, DC, and our first regional event last year in Chicago, this is our first visit to the West Coast. We are excited to meet a new group of advocates and share the Working 2 Walk experience. In the words of a previous attendee, "Thank you so much for the opportunity to attend "Working 2 Walk. I enjoyed seeing the new research, networking with attendees, and speaking one on one with lead scientists. The experience was invaluable." Our venue for 2010is the Phoenix Airport Marriott, and our co-host is The Craig H. Neilsen Foundation. The Foundation and Unite 2 Fight Paralysis share a common mission to find a cure for spinal cord injury, and we are proud to join as partners in presenting Working 2 Walk 2010. This will be an exciting year in the world of paralysis research. Several promising therapies should move to human clinical trials while laboratory breakthroughs continue around the world. We will be sharing the very latest and most accurate reports in Phoenix. For more information and event details as they become available, visit our Working 2 Walk web page. Over the next few weeks we will be upgrading our website to improve the visitor experience. Navigation, communications, event registration, and payment processing will all be enhanced, and we hope you enjoy the changes. The transition should be seamless for viewers, but please forgive any unexpected down time that might occur.

Spinal Cord Injury Walk 2009 Recap

Saturday, October 10th, 2009 was the Spinal Cord Injury Walk 2009. We couldn't have asked for a better October day this year considering the weather recently. In the middle of a two week stretch of rain and temperatures in the high 40s, we had a beautiful sunny day in the low to mid 50s.


There were 150+ people in attendance. After people registered and got their shirts, there was plenty of time to get a bite to eat, , listen to live music, and brownse the many silent auction items that were donated. It may have been a brisk trip around the track, but the hot coffee, hot chocolate, and warm hearts and personalities inside the pavilion was more than enough to make up for it.

We would like to take the opportunity to to thank all of our sponsors, volunteers,and the participants that made the Spinal Cord Injury Walk 2009 such a success for the third year in a row. We look forward to gathering again next year to show our support and raise awareness and funds for spinal cord injury research, advocacy, and the Northwest Indiana Spinal Cord Injury Group.

Spinal Cord Injury Walk 2009

You have been invited to participate in the Spinal Cord Injury Walk 2009!

This year we have seen some amazing developments with the passage of the Christopher and Dana Reeve Paralysis Act and the Stem Cell Research Enhancement Act. Now is the time to press on and continue advocating for cure research.

The Northwest Indiana Spinal Cord Injury Group is also growing as more spinal cord injured individuals become aware of our monthly meetings. The support we receive from each other in all areas of life is an invaluable resource for most of us.

We are asking for your support as a walker or a team leader in the Spinal Cord Injury Walk 2009, so we may continue to support the research and advocacy needed to help future spinal cord injuries, and to keep the Northwest Indiana Spinal Cord Injury Group going strong to encourage those in the region living with spinal cord injuries to live happy, healthy and productive lives.

The Spinal Cord Injury Walk 2009 will be held on October 10, 2009 at the Old Fairgrounds Park in Valparaiso, Indiana from Noon to 4pm, with Cornhole/Bean Bag Toss Tournament to follow at 6pm. Map

Click here to pre-register for the Spinal Cord Injury Walk 2009 online or go to sciwalk.info

Schedule of Events

Noon – 1pm Registration/T-shirt pick up

1pm – 2pm 5k/1.3 Mile Fitness Walk

2pm – 4pm Food, Music by Less than 11, Auction/Raffles

6pm Cornhole/Bean Bag Toss Tournament

-$50 registration fee

-1^st, 2^nd, and 3^rd place trophies and cash prizes

Click here to pre-register for the Cornhole/Bean Bag Toss Tournament online or go to sciwalk.info

Auction items include:

4 Box Seat tickets to a 2010 Gary RailCats game, a Chicago Blackhawks baseball bat signed by Stan Mikita and Ben Eager, a Chicago Bears baseball cap signed by Otis Wilson of the ’85 Bears, 2 Cubs ticket vouchers for the 2010 season, gift certificates from local restaurants and businesses, metal lawn sculptures from local artist, Cornhole board sets to name a few.

**If you are unable to attend but would still like to contribute, you can donate online here.

Attached are flyers and other information for the event. Thank you for your time and consideration.

Sincerely,

Joe White
Northwest Indiana Spinal Cord Injury Group
219-531-0055
nwiscig.blogspot.com

Save the Date

Spinal Cord Injury Walk 2009

At the Old Fairgrounds Park
Butterfeild Pavilion
704 McCord Rd, Valparaiso, IN
October 10, 2009, Noon-4pm

Registration 12-1pm
Walk 1-2pm
Food/Auction/Music 2-4pm


proceeds to benefit
Unite 2 Fight Paralysis
the NWI Spinal Cord Injury Group
and Paralysis Research


To register or for more information email nwiscig@gmail.com
or call 219-531-0055

Spinal Cord Injury Walk/ Roll/Ride 2008 Registration

Hello all,

The Spinal Cord Injury Walk/Roll/Ride 2008 is scheduled for Sunday, September 21, 2008 and the preregistration deadline is right around the corner. Shirts are guaranteed if you are registered by September 12, 2008

To register, simply email or call with your name, address, phone #, and shirt size. If you are walking with a team, feel free to include your team name and goal amount as well. Then show up at the Old Fair Grounds Park at 12pm on September 21, 2008 ready to receive your shirt and walk, and have fun.

Walker Registration and Sponsor forms, and flyers can be found right here. Just click the alide show.

Last year more than 180 people attended the walk and it was a huge success. This year should be even better. It is a great way to raise awareness for spinal cord injuries, exercise, and spend time with family and friends. There will be live music, a silent auction, door prizes, food, and a 5k-fitness walk.

We are pleased to announce the addition of a poker run this year. For those of you who are not familiar with a poker run, it is usually done on a motorcycle and consists of a route with five stops. A playing card is received at each stop and the highest poker hand wins. The route for this year can be found on the attached flyer. Registration for the poker run is 10:30-12 at the Fair Grounds Park and ends at Martini's. The last bike must be in by 5pm and prizes will be given away at 6pm. There will be live music and food provided at the end.

Pictures of the Spinal Cord Injury Walk 2007 can be found at http://picasaweb.google.com/nwiscig/SpinalCordInjuryWalk9292007.

The proceeds will benefit spinal cord injury research, advocacy groups and the Northwest Indiana Spinal Cord Injury Group. For more information call 219-531-0055 or email nwiscig@gmail.com.

I hope to see everyone on Sunday, September 21, 2008 for an unforgettable day of fun and fund raising!

Sincerely,

Joe White

Northwest Indiana Spinal Cord Injury Group

219-531-0055

nwiscig.blogspot.com

August meeting and more

We will be meeting again on Saturday, August 2nd at...

Gelsosomo's Pizzeria

1pm-?
2605 Laporte Avenue
Valparaiso, IN 46383
map | driving directions

This month we will be eating free pizza supplied by the Northwest Indiana Spinal Cord Injury Group and discussing the details of the Spinal Cord Injury Walk 2008. I have many flyers for everyone to hand out for each event and some Walk brochures so anyone interested can start getting donations. We still need as many business sponsors as we can get along with donated items for silent auction and raffle.

The Screening of Christopher Reeve: Hope In Motion on July 20 attracted 50 people. I consider that a success. We rented a theater with 150 seats, so there was plenty of room for more people. As I sat there looking across the crowd, I thought this is a bigger crowd than I could fit in in my living room. Everyone learned a lot and enjoyed it so much that when Part 2 started unexpectedly they just sat quietly and kept watching until the final credits rolled. It was perfect timing, because the theater had to be cleaned for the next movie.

Remember...

August 3rd at 2 pm
MAPPING STEM CELL RESEARCH : Terra Incognita… Trailer

This film puts a human face on this controversial subject. When neurologist Dr. Jack Kessler's daughter injured her spine in a skiing accident, he turned his energies toward finding a method to repair damaged spinal cords, re-focusing his research on developing a therapy using embryonic stem cells to regenerate the damaged parts of the nervous system. His research has taken him into a politically very sensitive area in which Catholic and fundamentalist Christian views about the beginning of life exert a powerful influence.

I hope to see as many of you as possible next weekend.

Joe

Day at the Races

May 15th, 2008 was the Day at the Races hosted by the Sam Schmidt Paralysis Foundation. The day started out by making the drive from NW Indiana to Indianapolis, which is only about two and a half hours away. Once we got there we all met in a parking lot outside the Indianapolis Speedway. The foundation handed out all of our credentials, passes, and a bag filled with all kinds of goodies.

We were then escorted to the infield parking lot and taken to the Green/Andretti hospitality tent for a complimentary lunch. San Schmidt spoke during lunch about his injury and the drive to keep going even after such a life changing event. The Sam Schmidt Paralysis Foundation has set up a collage scholarship program for people with spinal cord injuries.

After hearing from Sam and the sponsors of the event, we got the chance to check out Sam's new van sponsored by VMI, and there was a meet and greet photo session with the Firehawk, James Davison, and Sam Schmidt. We got complimentary backpacks, hats, and t-shirts from UMP Urologicals.

Next we were taken to a wheelchair accessible bleacher area just before turn 2. The view is great from this area. We had the rest of the day to meander around the garage area, watch the time trials from the bleacher area, or from right behind the pits.
On behalf of the Northwest Indiana Spinal Cord Injury Group, I would like to take this opportunity to thank Sam Schmidt, the Sam Schmidt Paralysis Foundation, and all off the volunteers and sponsors for the opportunity to attend the Day at the Races in Indianapolis.


Joe

Racing to Recovery

This has been a pretty busy week. Monday, May 12th, was the Racing to Recovery Gala hosted by the Sam Schmidt Paralysis Foundation . It was an interesting experience. I am amazed at what some people can do and put together to raise money and awareness for worthy causes. The evening was filled with awards, and silent and live auctions. I wish I had been more familiar with some of the drivers, because many of them came out to support the Sam and the Sam Schmidt Paralysis Foundation.

Here is a link to the Indy Car Coverage.


Pictures can be found at samschmidt.org

If anyone is interested in attending this event next year, visit samschmidt.org or contact the Northwest Indiana Spinal Cord Injury Group by email next April for more information. It is an evening worth checking out, especially for race fans.

Joe

Working 2 Walk 2008

If you couldn't attend this year's Working 2 Walk, Kate Willette wrote an entertaining and informative blog that covered the entire event. You can find links to her blog by clicking here.

Now a message from Unite 2 Fight Paralysis:

Dear Friends,

Just 2 weeks ago, Working 2 Walk 2008 concluded with legislative visits on Capitol Hill. Since we left Washington, there have been more than 400 new spinal cord injuries in the United States. Over the last 2 weeks. approximately $575 million has been spent caring for people with chronic spinal cord injuries.* Have you taken 5-10 minutes out of the last 2 weeks to phone or email your Senator's office and ask him/her to cosponsor the CDRPA?

We heard the message repeatedly at Working 2 Walk. Our researchers are excited by discoveries in their labs as they push forward to solve the complex puzzle of restoring function in the spinal cord. The biggest hurdle now is "translation" of laboratory principles to human application. The field of spinal cord injury is especially stymied by lack of 1. Coordinated Research; 2. A Clinical Trial Network; and 3. Funding.

The CDRPA addresses 1 and 2, and passage is within our grasp. Yes it is being held up by one Senator's hold, but we can apply pressure NOT by attacking that Senator, but by PERSISTENTLY communicating with our home state Senator's office about the urgency of this bill and asking him/her to cosponsor. If he/she is already a cosponsor, ask them to reach out to a colleague.

Can you spare 5-10 minutes ONCE A WEEK to contact your Senator and explain why this bill is so important? That we have been working for its passage for over 4 years? That precious time has already been lost waiting for its passage? What advancing research and restoration of even one level of function might mean to you?

Ask your friends and family to help you. Senate offices DO keep track of how many contacts they receive on a particular issue. Program your Senator's phone number into your cell phone, and follow up with a call ONCE A WEEK to see if they've signed on to the bill. The Senate is in recess May 24-June 1. Look for a Town Hall meeting in your area or schedule an appointment if possible.

Nobody else will do this for us. The message of Working 2 Walk was that the CDRPA is an essential and urgent first step to get curative therapies on the road to human application. All of the information you need on the bill itself, how to contact your Senator, FAQ's, etc. is available on the U2FP CDRPA web page.

Let's swing into action and see if we can get over 50 cosponsors signed on by June 15 (we're at 33 right now)!

Marilyn Smith, President
Unite 2 Fight Paralysis

*Source: Spinal Cord Injury Information Center. http://www.spinalcord.uab.edu/

Working 2 Walk 2008



We can't say it enough. HUGE Thank You's to:

- Our wonderful researchers who took time out of their busy schedules to bring us up to date on progress in their labs;

- The army of volunteers who worked hundreds of hours to take care of all the details that made W2W such a success;

- Our generous and supportive partners and sponsors, without whom W2W would never be possible.

Kennedy Krieger Institute
Sci-Step Inc
NWISCIG
Sam Schmidt Foundation
National Rehab Hospital
Acorda Therapeutics
Novartis
Alseres Pharmaceuticals
Pride Mobility
CSCIR
Integra Foundation
Restorative Therapies
Medtronics
Bioness
Project Walk
Craig Hospital
Push to Walk
Boston Medical
Next Steps Chicago
Determined2Heal

Working 2 Walk 2008

We are in the midst of the W2W Symposium. Today was the Science Day and we have been mixing and mingling swith scientist and advocate from across the country. Tomorrow is the Advocacy Day when I speak in behalf of the NWI SCI Group and we brush up on our dos and don'ts of legislative meetings. I can't wait to tell you all about it during May's meeting.

Joe

Local Wheelchair Basketball Exhibition

A Day at the Races 2008

The Sam schmidt Paralysis Foundation has released it's calender of event for this year. The Northwest Indiana Spinal Cord Injury Group is proud to be associated wit this organization. If you haven't ever been to an Indy Car time trial you ar in for a treat. The Sam Schmidt Paralysis Foundation Provides admitance to the track, lunch and a pit tour on 05/15/2008 for A Day at the Races. If you have been, than you know how much fun it can be.

Also consider the 9th Annual Racing to Recovery Gala Dinner on 05/12/2008.

Please contact me at nwiscig@gmail .com or Ida Cahill at icahill@samschmidt.org for more details.

Joe

Unite 2 Fight Paralysis has started promoting Working 2 Walk 2008. This is a great event that I have attended for the past three years. I am honored to be involved with Unite 2 Fight Paralysis and to have had the opportunity to meet with the scientists and politicians that directly influence paralysis research. For more information, please click the link below or contact Joe at nwiscig@gmail.com for a 2006 or 2007 W2W Symposium/Rally report.

Plan to join us for the 3rd annual Working 2 Walk in Washington

as leading researchers and advocates in the effort to find a cure for paralysis gather at the Kellogg Conference Hotel on the campus of Gallaudet University. The event will bring together members of the scientific, rehabilitative, and patient advocate communities for a lively exchange of information and ideas.

We have changed the Symposium’s format for 2008 and scheduled a variety of breakout sessions that will allow for small group discussions, increased opportunities for interaction between leaders of the various communities, and the ability to choose topics of particular interest. Following the first two days of meetings and workshops, leaders will visit Capitol Hill on Tuesday, April 15, to meet with legislators and discuss the costs of care vs. cure and the need for increased research funding.

Working 2 Walk is a unique opportunity that you won't want to miss.

“I want to thank you once again for inviting me. It was such an exciting day. It meant so much to me to meet so many advocates for SCI research and to hear everyone's story. I certainly feel a heightened drive to work on chronic SCI. I told my students after the event that I think every young researcher should attend this event.”

Dr. Juanita J. Anders, PhD, USUHS

Spinal Cord Injury Walk 2007

The walk was a great success! I would like to thank everyone that came out to participate, and all of sponsors and volunteers that made it possible.

We met a lot of new people, got some exercise, had some good food, won some awesome items donated by local businesses and artists, listened to some good music, and raised just over $13,000. When we combine that with prepaid sponsors and do some more math, that's around $15,000 to split three ways. The Northwest Indiana Spinal Cord Injury Group, Unite 2 Fight Paralysis, and paralysis research will all benefit from everyone's hard work and cooperation.

Here are some pictures from Mike Gard and a few from Jennifer Aitchison. Check back frequently for future postings, and meeting dates and times.

Thanks,

Joe