Friday, December 7, 2007

A Thank You from U2FP

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December 5, 2007

To Joseph White and the members of the Northwest Indiana Spinal Cord Injury Group:

Congratulations on the astounding success of your fund raising Spinal Cord Injury Walk. Not only did this event raise precious dollars for the paralysis community, it helped to spread awareness and visibility for our efforts to reach a cure. We at Unite 2 Fight Paralysis are proud and grateful to work with everyone at NWISCIG.

Please accept our most sincere thanks for your donation of $5,000 to U2FP. We hope that many of you will be able to join us at Working 2 Walk, our annual event in Washington, DC, that brings together members of the community to learn about the latest research and advocate for funding.

Once again, thank you for all of your hard work in reaching out to your local community. You have provided a model for advocates around the country.

All the best,

Susan Maus, Marilyn Smith & Betheny Winkler

Unite 2 Fight Paralysis Board of Directors

Sunday, December 2, 2007

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 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

Friday, November 30, 2007

Wheelchair Basketball

Ben is playing basketball with the Chicago Wheelchair Bulls this year. They have a coup[le of home games and tournaments. Check them out if you get a chance.

2007/2008 Schedule




10/20 Kids Camp 2007

Mozart Park - Chicago Park District








San Antonio



1/11/07 - 1/13/07







Kids Day 2008 NEDSRA



***Champaign, IL 10/27 - 10/28

Saturday 10/27

1:00 pm ________ vs. Champaign Fire (Conference)

7:00 pm ________ vs. U of I Men

Sunday 10/28

10:45 am ________ vs. RIC Hornets (Conference)

Games played at the IMPE Building which is near Memorial Stadium

If interested in playing in the Home Tournaments please contact Joe Gerardi at

A free movie screening

Terra Incognita 2007

Terra Incognita is a feature length documentary film and companion civic engagement campaign featuring the story of Dr. Jack Kessler, the current chair of Northwestern University's Department of Neurology and Clinical Neurological Sciences, and his daughter, Allison, an undergraduate student at Harvard University. When Kessler was invited to head up the Neurology Department at Northwestern, his focus was on using stem cells to help cure diabetes. However, soon after his move to Chicago, Allison -- then age 15, was injured in a skiing accident and paralyzed from the waist down. In the moments following the accident, Dr. Kessler made the decision to change the focus of his research to begin looking for a cure for spinal cord injuries using embryonic stem cells. Through Kessler's story, we bring the stem cell debate to the public for discussion. The film follows the constantly evolving interplay between the promise of new discoveries, the controversy of modern science and the resilience and courage of people living every day with devastating disease and injury.

Please contact us if you'd like to host a community screening of the film.

90 minutes

Saturday, December 15th 2:00pm
Chicago Cultural Center
78 E Washington St
Chicago, IL 60602
(312) 744-6630
Get directions

"Terra Incognita" screening
Join Kartemquin and Independent Lens for a Community Cinema screening of Kartemquin's recent stem cell documentary, "Mapping Stem Cell Research: Terra Incognita."
admission is free.

I will most likely be going to see this movie again. It is a great documentary that is both touching and informative. Contact me at for more information about possibly riding together.

The film will also be broadcast nationally on PBS' Independent Lens on January


Saturday, November 24, 2007

Scuba Diving

I would like to know who is interested in Scuba Diving lessons with the Scuba Tank, here in Valparaiso. They have offered an Experience Scuba Clinic to the NWISCI Group and maybe special lessons to interested parties. It sounds like a great life experience to me. Anyone interested can contact me at for more information. Their website is, check it out.

December meeting

We will be meeting again on Saturday, December 1st.

Gelsosomo's Pizzeria

2605 Laporte Avenue
Valparaiso, IN 46383

map | driving directions

Please contact nwiscig@gmail to rsvp.

The group meetings are open to anyone. Persons with or without spinal cord injury, friends or family, or anyone just wanting to learn more about spinal cord injuries are welcome.

We hope to see you there.


Sunday, November 4, 2007

November/December Meeting

Saturday, November 3rd was the last meeting. We had six people attend. It was a good time. We talked about everything from the SCI Walk, to going to school, to parenting, to falling out of your chair, to ADA and wheelchair accessible vs. handicap accessible, to water skiing and snow skiing, to scientists/researchers, to relationships, to insurance/Medicare. Just to name a few topics.

We will be meeting again on Saturday, December 1st.

Gelsosomo's Pizzeria

2605 Laporte Avenue
Valparaiso, IN 46383

map | driving directions

We hope to see you there.


Wednesday, October 3, 2007

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.



Sunday, August 26, 2007


In the third week of August Ben and I took advantage of the free week that Sci-Step offers. I thought it was an awesome experience.

Sci-Step describes their therapy program as an "Activity based recovery program"

"In the past, rehabilitation after a spinal cord injury focused on adaptation to the injury. It was believed that the possibility of improvement would occur during the first six months and that recovery more than two years after an injury was unattainable.

Over the last few years, experts committed to the philosophy that with the right combination of therapies, recovery is possible - even months or years after an injury, helped changed the future for individuals suffering from a spinal cord injury.

SCI-Step offers these proven techniques to acute and chronic spinal cord injuries, allowing the ability to recover independence, movement and sensation, as well as, attain improved health and quality of life."

bullet Functional Electrical Stimulation
bullet Gait Training
bullet Weight Bearing
bullet Cardiovascular Conditioning
bullet Orthodic Training
bullet Isolated Muscle Movements
bullet Strength Training
bullet Aquatic Therapy
bullet Acupuncture
bullet Massage Therapy
bullet Nutrition Counseling

We got there on Sunday and were very impressed by the housing that Sci-Step provides. There was a note on the table that read, "Welcome Joe and Ben. See you in the morning." We had a two bedroom apartment with all the comforts of home. On top of that, the complex has a pool, computer center, and a small movie theater that can be reserved.

Now the therapy...

We got to Sci-Step in the morning, finished some paper work and got right to work. The physical evaluation was almost like a workout for me. Matt stretched and tested the strength in my legs and then asked me to demonstrate my walking.

A little history about my function... I have a C6/7 incomplete spinal cord injury. This means that I have some sensation and motor function below my injury level. I can stand and even walk short distances with a walker. Unfortunately for me this also means that I have uncontrollable muscle spasms that make my legs shake, bounce and even contort into strange and painful positions. I take a fair amount of medications to combat that on a daily basis.

Up until this point I had been able to walk about 30 feet at a time with a walker, then I was done. That's about what I did. Then Matt says that we are going to try wall squats and gets one of those exercise balls. With Matt's help I did 20 wall squats and made it back to my chair. Now I 'm thinking that we're probably done. Nope, it's time to ride the "Ergys2" FES (functional electrical stimulation) bicycle. They put 12 pads on my legs and rear, set me up in the bike, and turned on the electrical stimulation. I have enough sensation that I could only handle an E-stim level of 30. That makes me "hyper sensitive". It takes a level of about 130 to cause a contraction strong enough to move the large leg muscles, but even at 30 there was a tingly zapping feeling that helped me initiate a muscle contraction. I rode this bike for an hour, helping my legs move the peddles around. I liked the RTI FES bike a little better. It works off of the same theories, but has a motor to help your legs around when your muscles fatigue. Now I was done. What a first day. My lower back, glutes, and legs felt like they were on fire. Interestingly enough I almost forgot to take my meds. Usually I can tell time by the way that my body feels and how soon I'm supposed to take my meds. This ended up being a theme for the week. My muscles were so relaxed that I didn't feel like I really needed my antispasmodic meds.

Our days in Mason, OH went just like that. We would get up, work out for three hours, eat lunch, head back to the apartment, and I would have to lay down for a while. Later we got the chance to enjoy the pool in the apartment complex.

My experience at Sci-Step showed me that I could control my spasms and strengthen my muscles at the same time, if I had the resources. I almost forgot... It wasn't all work and no fun. On Wednesday I got my first acupuncture treatment and on Thursday I got my first full body massage.

Maybe I can get Ben to comment on his experience at Sci-Step...?


Tuesday, August 7, 2007

Adaptive water ski clinic, Twin Lakes WI

There was a pretty good turn out for the clinic. I went on August 1st and 2nd. It was a blast. The clinic was open to kids of all abilities and ages. Adaptive Adventures and Dreams For Kids also had a hand cycle vendor there and kayaks to try.

Water skiing is one of my favorite things to do since my injury, but there were a few people that have expressed concerns about how safe it is. The people organizing this clinic have done so for 12 years and take every safety precaution necessary. For beginners or people with little to no hand function or trunk control. They have a sit ski with outriggers. This makes it nearly impossible to tip over.

They also have a "chase boat", that follows all of the skiers. This boat has volunteers that are ready to assist in any way needed. For questions or a more detailed description, email or call. I will leave you with a few more pictures from the event.


September Meeting

Our September meeting will be on August 25th. The first weekend in September is Labor Day Weekend and many people already have plans.

We will have the meeting at my house, 1pm. Email or call 219-531-0055 for directions or more information.



Friday, July 20, 2007

Spinal Cord Injury Walk 2007

Align Center
Walk Those Who Can't

Spinal Cord Injury Walk 2007
At the Old Fairgrounds Park/Butterfield Pavilion
704 McCord Rd, Valparaiso, Indiana
September 29, 2007, Noon-5pm

  • Noon- turn in pledge envelopes/hand out shirts
  • 1pm- 5k/3.1 mile fitness walk (that’s only 4 times around the track)
  • 3pm- Information, food, music, raffles and a silent auction in Butterfield Pavilion

*Proceeds are to benefit Unite 2 Fight Paralysis, paralysis research, and the Northwest Indiana Spinal Cord Injury Group.

The Northwest Indiana Spinal Cord Injury Group: Our mission 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.

A few spinal cord injury facts…

  • Every 41 minutes, another American sustains a spinal cord injury resulting in paralysis. This translates to an estimated 11,000 new injuries annually.
  • The average age at injury is 38, with 56% of all injuries occurring between the ages of 16 and 35. Young adults reaching the peak of their earnings potential.
  • In addition to paralysis, secondary conditions resulting from a spinal cord injury include compromised respiratory, bowel, bladder and sexual function as well as chronic urinary tract infections and pressure sores.
  • The estimated annual direct costs of care for Americans living with paralysis due to spinal cord injury are $15 billion. One of the costliest conditions in our country.
  • Spinal cord injury knows no boundaries. In a split second it could happen to you, a family member, friend, or neighbor.

Sources: (1) Spinal Cord Injury Information Center,
(2) Care Cure;

For more information email
or call 219-531-0055

Tuesday, July 10, 2007

Rally for the Cure: Chicago

Rally Hits the Road: Chicago
Sunday, September 9, 5:00 p.m.
Navy Pier, Grand Ballroom


Second City Comedy and Special Guests


Sam Schmidt, IRL Race Car Driver

Dr. Jack Kessler, Northwestern University,

Dr. Wise Young, Rutgers University

2:30- 5:00 p.m.
Update on spinal cord injury research
Presentations by Dr. Jack Kessler and Dr. Wise Young.

5:00- 7:30 p.m.

Hors D’ Oeuvres- Silent Auction- Awards- 2nd City Performance

Tickets: $125/ person

Attire: Business to Cocktail.

Directions to Navy Pier:

All Proceeds to Benefit Spinal Cord Injury Research

Striving From Laboratory towards Human Application

For more information contact: Next Steps SCI Rehab

To purchase tickets online or sponsor the event


Contributions are tax-deductible per IRS codes

Sunday, July 8, 2007

One week of free physical therapy at SCI-Step

They are a facility where determined individuals can concentrate on their recovery using the most advanced equipment combined with crucial rehabilitative components and the knowledge of dedicated medical professionals specializing in physiatry, physical therapy and exercise physiology.

SCI-Step is now offering a free trial weel of physical therapy, with housing, to those with spinal cord injuries. The staff is very friendly and accomodating. Located in Mason, Ohio , they are close enough to make the trip worthwhile.

Below is a quote from the SCI-Step website:

"Being in DC and meeting all the wonderful individuals gave me the inspiration to do more. We are now offering one week at no cost to anyone interested in trying out our program. We want everyone with an SCI to have the ability to experience all the beneficial components necessary for SCI recovery and health maintenance. Whether you come for a week or decide to stay longer, we want to help in any way that we can. For more information and to receive an application, please email me at
Already had a trial? We would love to have you here again!" -Michele Brock,

Spinal Cord Injury Walk 2007

We are in the process of planning a fundraising walk for late September. The proceeds from this walk will benefit spinal cord injury research, Unite 2 Fight Paralysis, and the NWI spinal Cord Injury Group. Many volunteers will be needed to keep things in order. Please contact for more information.



The Northwest Indiana Spinal Cord Injury Group meets on the first Saturday of each month, at 1pm. Officially we meet at Porter Hospital's Education and Rehabilitation Center, 1401 Calumet, Valparaiso, IN. We have also been known to go to Gelsosmo's, in Valparaiso, to get lunch. Visit this site for updates on when future meetings will be.


A Day at the Races - September 8th, 2007 - Chicagoland Speedway

"The Sam Schmidt Paralysis Foundation's Day at the Races program is again planning a Day at the Races program at Chicagoland Speedway.

The program is designed for people with spinal cord injuries to spend a day at the Speedway. For many guests it will be their first visit and the first time to watch IndyCar qualifying and races. The day is designed to be informal but one that is fun filled.

Lunch takes place in the Andretti Green Hospitality Tent where Sam Schmidt will address the guests and answer questions relating to his spinal cord injury, how he overcame his many challenges and his career as an IndyCar driver and now an IndyCar Pro Series Team Owner. Ida Cahill, President / CEO of the Sam Schmidt Paralysis Foundation, will describe the work of the Foundation and provide resource materials.

Following lunch everyone will take a tour of the garage and pit areas and have the opportunity to meet IndyCar drivers and team owners. Space is limited. For further information contact the Sam Schmidt Paralysis Foundation."

I got the chance to attend the "Day at the Races" in Indianapolis this June, and it was a great time.


Adaptive waterskiing in Wisconsin

One of my favorite things to do since my accident, is water ski. There are two groups that host adaptive water ski clinics.

The Rehabilitation Hospital of Indiana hosted one on June 6th and 7th, in Cicero, In.

The second clinic is hosted by Adaptive Adventures and Dreams for Kids. It will be held in Twin Lakes, Wisconsin on July 24 and July 31 - August 2.

These clinics usually have a fee of only $5, include lunch, and are open to all disabilities.

Water skiing is one of the few things that make me kind of forget about my wheelchair for a little bit. I urge everyone to check it out.


Welcome to the Northwest Indiana Spinal Cord Injury Group.

This site was set up to keep people informed about the activities of the group. Whether it be the days and times of our meetings, events and outings, or new information about a cure for paralysis; it will be posted on this site. Our hopes are that the group grows and more people feel empowered to live happy, healthy, productive lives. Please feel free to leave comments and/or contact us at