Saturday, October 2, 2010

Wheelchair Accessible Caves

A little over a year ago my daughter asked if I could ever take her to go see some caves. To which I immediately replied, "I'm sure I could. We have to do some research first though." I don't know if you've ever done a search for wheelchair accessible caves before, but nature isn't too wheelchair accessible sometimes.

I read a number of reviews, and went to so many websites that my head started to spin. It was a little confusing, because I would read websites that said there was no wheelchair access and then read reviews that would say some of the caves were accessible. I think the discrepancy has something to do with the difference between "wheelchair accessible" and "handicap accessible". Just because something is handicap accessible, doesn't mean that it will work out for wheelchair users.

We got to Mammoth Cave National Park, and I expected to be able to do something there cave related. After all, it's a national park. Nope... none of their cave tours are wheelchair accessible. All tours start at the Visitor Center, then a (non-wheelchair accessible)bus takes you to the mouth of the cave. I was told that I could follow the bus to the entrance of the big cave so I could hear a story, but then my daughter couldn't even go on the tour alone since she was only 12.

One of the rangers got an excited look on his face and told us to hang on, he'd be right back. He came back with a pamphlet for Cub Run Cave in Cub Run, KY. They have built a boardwalk that goes about 1/2 mile into the cave. I believe they did this just to keep people from walking on and contaminating the cave floor. It would have been great if the owner had the forethought to make the ramp ADA accessible... no such luck though. There are 12 steps to get up to the boardwalk. I just got out of the wheelchair and bumped up the steps on my butt and got back in the chair with a slightly wet butt. It a little narrow, so I could only turn around at certain spots. The tour guide was super great and friendly, however due to liability purposes can't help anyone up and down the steps. They supposedly have tentative plans to someday get rid of the stairs and slope the ramp down to the cave floor.

I took some pictures but the Cub Run Cave website has some good pictures as well. If you're interested in caves, and you have help or can bump up 12 steps, it's well worth the trip.


The other cave that we found was the Kentucky Action Park/Outlaw Cave in Cave City, KY. There isn't a ramp or boardwalk in this cave. The entrance is ground level though, a little rough... but there are no steps. The two caves and how they're treated couldn't be more different, but I think they're both great experiences though, especially considering the limited wheelchair accessible options.

Happy Caving!

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

Saturday, August 28, 2010

September meeting and more...

September is almost here and we hare having this month's meeting on Sunday, September 6th, 2010. Due to the many positive reviews from the August meeting, it will be at my house Cookout Style again.

I realize that it's Labor Day Weekend so if you already have plans you are forgiven, if not well... here's a cookout to go to.

I will supply the hot dogs and hamburgers, please feel free to bring a dish and tasty beverage of your choice. It promises to be a good time (weather permitting).


Please RSVP, so we know how many to expect.

Sunday, September 6th, 2010
Joe's House
1pm-?
1052 Joliet Rd
Valparaiso, IN 46383

Park across the street at McDaniels. Hope to see you there.

A few dates to save...

Popcorn Festival, Valparaiso, IN - Saturday, September 11, 2010
(I have registered our group for a spot in the parade. We need volunteers to help with decorating a truck with popcorn, walk/roll/ride a handcycle, and pass out material in the parade. Parade starts at 10am, line up at 8. View Parade Route here.)

Spinal Cord Injury Walk - Sunday, September 26, 2010
(Pamphlets and sponsor forms can be found online. Let's go out and kick some butt getting donations)

Working 2 Walk, Science Symposium
, Phoenix, AZ - November 11th -13th, 2010


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Thursday, August 26, 2010

Spinal Cord Injury Walk 2010




Butterfield Family Pavilion/Fairgrounds Park
704 McCord Rd, Valparaiso, IN 46385

Please preregister at www.sciwalk.info

Schedule of Events

12pm - Registration/shirt pick up
1pm - 5K/3.1 mile Fitness Walk and Roll
2pm - FOOD, MUSIC, RAFFLES, SILENT AUCTION, and MORE
...

Proceeds to benefit 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.


Preregister by Monday September 13, 2010 to guarantee your shirt...


Monday, August 9, 2010

The August meeting

Wow! What a good time. More people showed up than were expected. That's always a more welcome outcome than less people. Burgers and hot dogs were provided, and others ended up bringing many side dishes. There was good conversation all around, but the highlight for me was playing bags (cornhole) and Frisbee when Ben got his basketball chair out of his car. Thanks to all who attended. I'm looking forward to seeing you on September 5th, just three weeks before the Spinal Cord Injury Walk 2010.

Here are a few picture from the August cookout meeting...

Wednesday, July 28, 2010

August Meeting and more...

August is almost here and we hare having this month's meeting on Sunday, August 1st at my house Cookout Style.

I will supply the hot dogs and hamburgers, please feel free to bring a dish and tasty beverage of your choice. It promises to be a good time (weather permitting).

Please RSVP, so we know how many to expect.
Sunday, August 1st, 2010
Joe's House
1pm-?
1052 Joliet Rd
Valparaiso, IN 46383

Park across the street at McDaniels. Hope to see you there.
A few dates to save...

Spinal Cord Injury Walk - Sunday, September 26, 2010

Working 2 Walk, Science Symposium
, Phoenix, AZ - November 11th -13th, 2010
(We are working on a possible fund raiser that would include a Grand Canyon hike immediately following Working 2 Walk this fall, please let me know if you are interested in attending one or both.)


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

Friday, July 2, 2010

July Meeting and more...

Hello all,

July is upon us and we hare having this month's meeting on Sunday, July 11th as not to compete with everyone's 4th of July Holiday plans this weekend.

Please RSVP, so we know how many to expect.
Sunday, July 11th, 2010
Gelsosomo's Pizzeria
1pm-?
2605 Laporte Avenue
Valparaiso, IN 46383

Hope to see you there.
A few dates to save...

Spinal Cord Injury Walk, Valparaiso, IN - Sunday, September 26, 2010

Working 2 Walk, Science Symposium
, Phoenix, AZ - November 11th -13th, 2010
(We are working on a possible fund raiser that would include a Grand Canyon hike immediately following Working 2 Walk this fall, please let me know if you are interested in attending one or both.)


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

Wednesday, March 31, 2010

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.

#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.
#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.

Wednesday, March 24, 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 2010
is 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, U2FP
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.

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.

Wednesday, March 3, 2010

March 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.

  • If you're involved in any SCI related sports or hobbies, we'd like to hear about it.

  • If you have a job or go to school, we'd like to hear more about that too.

  • Please take the time to help us update our files by emailing the completed the questionnaire below?
___________________________________________


It's that time of year again. I am in the process of finding and updating contact information, and I thought I would throw in a little survey as well. Please reply with the missing information as soon as possible.

Name:

Address:

Phone:

Alternative email:

Your affiliation with SCIs or the NWI SCI Group:

Injury Level
:

Injury Date:

Injury Cause:

Family members:

Do you have a degree? If so, in what/Graduation date?

Do you work? If so, where/job description/how long?

What are some of your hobbies or interests?

Do you or have you participated in any SCI adaptive sports or activities? If so, what/where?

Do you or have you participated in any rehab programs after your acute rehab hospital stay
? If so, where/when?

Do you or have you attended any NWI SCI Group meetings? If so, what was/is your impression?

Do you or have you attended a NWI SCI Walk? If so, what was/is your impression?




Thank you for participating in this contact info update and survey. Please remember to contact us with any interesting, fun, educational, or exciting personal or spinal cord injury related news so we can pass it on to the rest of the group. We, as people with spinal cord injuries, are a rather sizable hidden minority in the local community and in the country. The more resources and networking connections we have, the better equipped we are to deal with all that life has in store for us. Please remember to check out www.nwiscig.blogspot.com for more information about the group and activities of the group.


Thank you for your time and consideration,


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

Monday, February 15, 2010

Have you ever wanted to learn to fly?

Able Flight and Purdue University have partnered for a unique flight training program for people with disabilities for this summer. All training, travel, and lodging expenses will be paid under the Able Flight Scholarship program. Students will live in accessible university housing and train in specially adapted aircraft. It will be possible for students to earn an FAA pilots license by the end of the 4-5 week training program.

A number of Able Flight scholarship recipients with spinal cord injuries have completed training and are now licensed pilots. You can see profiles of many of our Scholarship winners here: http://www.ableflight.org/scholarships/65.html.

Applications are available on the Scholarship page on Able Flight's website (http://www.ableflight.org/scholarships.html), and applicants are strongly encouraged to read the "Frequently Asked Questions" (FAQs) page as well.

Current or incoming Purdue students are given first priority for consideration, followed by Indiana high school juniors and seniors (must be at least 17 years old), Purdue graduates, and then other Indiana residents.

Please note that the training will be intensive and challenging, so only highly motivated applicants should apply. Applicants must also have a schedule that would allow them to spend up to 5 weeks in West Lafayette beginning in early June.

We appreciate your help in spreading the word on this opportunity.You should find answers to most questions on our website, but you may also feel free to contact me for additional information.

Best regards,
Charles --
Charles H. Stites
Executive Director

cstites@ableflight.org
www.ableflight.org
919-942-4699

Tuesday, February 2, 2010

Feb. 26th the Chicago Bulls play against Portland, the Chicago Wheelchair Bulls will be playing at halftime. Cheap (standing room) tix are only $10.

http://www.nba.com/bulls/tickets/individual.html

Here are some pictures of a Wheelchair Bulls game in 2007

Monday, February 1, 2010

Paid Research Surveys

Both the University of Michigan and the Rehabilitation Institute of Chicago are currently conducting surveys for SCI's. They consist of 4 surveys that take 45 -60 minutes. U of M pays $100 total, RIC is a little more. That's $25 an hour plus.
Contact info is...

R I C
Ana Miskovic
312-238-0713
amiskovic@ric.org

U of M
Jane Walters
734-763-9773
janewal@umich.edu


For the U of M you have to be on their registry, it takes a few weeks.

February Meeting

Hello all,

We will be meeting again on Saturday, February 6. Please email an RSVP and come on out for some free pizza and good company. We will be discussing ideas for fundraisers, and activities for later this year.

Gelsosomo's Pizzeria

1pm-?
2605 Laporte Avenue
Valparaiso, IN 46383

map | driving directions


Hope to see you there.

Monday, January 4, 2010

January 2010 Meeting

Hello all,

We will be getting together again for a post holiday meeting on Saturday, January 9th at...

Gary and Heidi's House

(Email nwiscig@gmail.com or call 219-531-0055 for directions)

I look forward to seeing you all again and hearing how you've all been for the past couple of months. This month will be a post holiday carry-in meeting. I will be supplying a spiral cut ham, but we need your help to truly make it a success. Please reply to all if you are willing to bring a side dish or desert. A big thanks goes out to Gary and Heidi for hosting and any one else who contributes.

We would like to get an idea of where the group is heading and what there is to do this year as far as activities, outings and fund raising opportunities, so bring your imaginations and your appetites this month.

See ya soon,

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