How funny is it when someone writes to you thanking you for letting them run 26.2 miles!

Leigh:

I wanted to thank you for everything you did that made this such an awesome experience. You covered all the bases and made it real easy. It has been a crazy week. All the preperation and then the big day and I cannot believe it's all over.

Today, I looked at the clock remebering where I was last Sunday at this time and had fun reliving the coolest day ever.

I'm hoping you will keep me in mind for next year. I am already tweaking my fundraising and training stratgegies and if I get the opportunity, I will improve on both.

Ned Norton

Norton (pictured here) ran for Team Reeve in last November's ING New York City Marathon. He raised over $4,000.00.

He is doing all this from his Warriors Gym (Home of the Warriors on Wheels) in Albany, NY. Norton is a former Olympic trainer and body builder. The thing about him is that he is not injured. He does not have any close freinds or family that are injured. Norton was just working at the gym and saw first hand what a certain level of fitness brought to people living with disabilities both for their mind and body.

Get more information and fitness and rehab in the Paralysis Resource Center.

Find out more about Warriors on Wheels @ 518-427-1462.

Join Team Reeve. It's not just about marathons, so don't be scared off!

Leigh A. Alspach
Manager, Team Reeve®
Christopher & Dana Reeve Foundation
 

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The Reeve Foundation Information Specialist (IS) team received an inquiry from a man who has been a quadriplegic for 16 years. His power wheelchair was 11-years-old and no longer worked. Medicaid guidelines did not allow for repairs or replacement because the man was in a nursing home.

Desperate so he can get out of bed and move about independently, he contacted the Reeve Foundation three times over a five month period. An IS contacted numerous agencies in his home state but without any luck. This week the IS member received a call that a chair was available but needed to be retrieved ASAP before it was listed in the general inventory.

Knowing that it might be a long time before a similar chair became available the IS located a taxi company that was willing to deliver the wheelchair to the man. An anonymous donor covered the cost of the taxi and its delivery.

Talk to an Information Specialist (Mon.-Fri., 9 am to 5 pm ET) at 800-539-7309.
International callers use 973-467-8270.

Email an information specialist.

Bernadette F. Mauro
Director, Information and Resource Services
Christopher & Dana Reeve Foundation

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Here is a wonderful, unexpected thing that happened last month. It's a great feeling when others recognize that we are working hard and on the right path. Word came via email from Marilyn Hamilton:

Hi Guys....

Hope all is well in your lives. Again thank-you for a most wonderful research symposium. Bob and I not only enjoyed connecting with you ALL but also really learned a great deal from your family of dedicated researchers. Know we are cheering you on!

I'm checking in today to secure information so I can direct a $10K donation to the Foundation. In 2006 Maria Shriver, as First Lady of California, honored me with a Minerva Award as an Architect of Change. Over the past 8 years Maria has presented 31 Minerva Awards during her annual California Governor and First Lady's Conference on Women. Good NEWS. Today I received word from Maria that she is granting each Minerva's a $10K grant to further support my work.

As a gesture of appreciation and support I would like to direct this donation to the Reeve Foundation to use as you wish.

Marilyn has been a friend of the Foundation for years. She is a business consultant and motivational speaker. I got to meet her and her husband Bob this year at the symposium in Arizona. They are wonderful, caring people. And this is not the first time we have benefited from their generosity.

Rob

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Chris Dynan is a 15-year-old with more motivation than your average teenager. Last August, Dynan broke his neck in an ATV accident. Months later, Dynan is a patient at Courage Center in Minnesota, a Reeve Foundation NeuroRecovery Network (NRN) Center, relearning how to walk. Specially-trained therapists work muscles in his legs as he is suspended in a harness over a treadmill. This is known as locomotor training.

Dynan's mom looks up her son and his courage.

“He’s an amazing kid,” said his mother Karie Dynan. “He has the best attitude. He’s highly motivated. He’s my hero.”  

Watch the video from CBS and you'll see why.

More on Courage Center. 

The way in which the NRN delivers locomotor training (LT) is based on current knowledge of how the brain and spinal cord control stepping and how the nervous system learns a motor skill. LT is delivered in a systematic and standardized way across all NRN centers using three primary component parts:

1. Step Training using Body Weight Support on a Treadmill (BWST) and manual assistance

2. Over-Ground Walking Training

3. Community Ambulation Training

Learn more about our NeuroRecovery Network program.

Janelle

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I just want to take a minute to share with you a little about one of our most amazing Team Reeve athletes, John Carson (pictured).

John sustained a spinal cord injury at the C5/6 level (most injuries at this level result in quadriplegia, lack of hand function) one year and seven months ago on July 16, 2009. He was out training for a triathlon on his bike and was hit by an SUV. In the moments after the accident, John was in and out of consciousness, not fully knowing what was happening, but he knew for sure his life would never be the same.

John's family immediately reached out to our Paralysis Resource Center for answers and resources. As an athlete, he and his family knew he needed something beyond regaining the ability to walk to motivate him each day in physical rehabilitation. He set his sights on the Ford Ironman Lake Placid on July 25, 2010 -- just over a year after his injury.

The thing that I want to share with you that I think is most amazing about John, and I felt it from the moment I first spoke with him on the phone, despite all he and his family have been through in the last year plus, it's always been about others. He asked me if he could wear the Reeve Foundation colors and Team Reeve logo to help spread awareness of the work we continue to do, now that our most recognizable leaders are gone. He set his fundraising goal and to date has raised over $10,000 to support our foundation programs. For Chistmas last year, he asked his friends and family to forego regular gifts and donate to his fundraising page instead.

John is truly all we can ask for in an athlete, a volunteer, and an advocate of the Christopher & Dana Reeve Foundation. I can't tell you the number of times I've used John as an example of what you can do when faced with adversity and I believe he is an inspiration and mentor to our entire community.

You can read more about John here.

Read more stories about our Team Reeve members.


Leigh A. Alspach
Manager, Team Reeve®

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The Paralysis Resource Center (PRC) receives emails and calls from all over the world. Last week we received an email inquiry through our  Spanish  website (contact an Information Specialist (IS) in English or Spanish) from a gentleman being treated at a well-respected South American hospital.

He was experiencing autonomic dysreflexia (AD) and his physician had identified bladder stones as the cause. He contacted the Reeve Foundation because of the severity of his AD and his physician telling him to just take Tylenol. The tylenol was not effective and his blood pressure was very high.

The PRC staff communicated with him in Spanish  by email and telephone. In the course of the conversation we found out that his surgeon wanted to remove the bladder stones without anesthesia. The surgeon's belief  was that because he was paralyzed he wouldn’t feel any pain. He wanted to know if this was safe for him to have surgery without anesthesia.

The staff explained (in Spanish) how his brain still receives pain messages even though his body no longer does. It would still be incredibly dangers and possibly deadly to have surgery without anesthesia. We sent a booklet on AD for him  as well as a clinicians guide to share with his urologist.

The IS team members followed up via email to see if any additional information was needed.  We received an email from his mother indicating the procedure was done under anesthesia and the educational material changed the physician mind.  The bladder stone was removed safely and he recovering.

Knowledge equals power!

Here's a fact sheet on autonomic dysreflexia.

Find out more about secondary conditions.

Bernadette
Director, Information and Resources Services

Here is a an email I got last Monday (March 7th) from our contact at MetroHealth Hospital Foundation. They are a recent Quality of Life grantee:

Hi Donna,

Some wonderful things are happening here at Metro Health Hospital because of your support. I just couldn't wait for the final report to share some of the news. Check out the attached document.

Thank you so much for improving the quality of life for our ventilator dependent patients.

With utmost appreciation,

Shelly

This is a sampling from the document she attached:

Metro Health Hospital’s Assisted Breathing Center (ABC) patients have access to five laptop computers- four laptops have been assigned to specific patients and one is rotated among the remaining patients. This technology connects them with family, friends, and the outside world.

Special adapted software and devices were made available to those who would not otherwise be able to use the computer, allowing them independence, facilitating better communication with staff, and improving their quality of life.

Imagine the hardship of not only having to live attached to a ventilator, but to do so with minimal contact with your friends, family, and the world outside your hospital room. The patients at Metro Health Hospital’s Assisted Breathing Center have limited mobility, as they struggle with traumatic and debilitating injuries and disorders.

The simple ability to email friends, network on social media sites like Facebook, and surf the internet greatly improves the quality of life for patients with limited mobility or communication. The computers and adaptive equipment provided by the Christopher Reeve Foundation have led to some remarkable improvements in vitality and emotional health of the patients in the ABC.

This is how your gift has impacted the lives of these patients:

I would like to thank the Christopher Reeve Foundation for the use of this brand new laptop. I believe I’ve had it in my room for about 2 months. I am on the trach ward at Metro Health, and I wean up to 14/15 hours a day. However, due to obesity, a four week coma, several deadly infections, and all the time I’ve been in bed – sedentary, I am not yet able to walk. So, no doubt, the use of this computer has brought me so much joy!

On Facebook, I have been able to partake of several wonderful pictures, for instance, my brand new “great” niece, Olivia. My son’s new residence, and all the pictures his wife posts regularly of their new adventures. And just being able to communicate with friends and family, as they are all 3/5 hours away. I am also able to use the computer in every way possible, and enjoy every minute of it. One night, I was so enthralled that I completely forgot to order dinner! To sum it up best, let me tell you of what I wrote on Facebook “Did you know that the use of this computer was made available to me by the Christopher & Dana Reeve Foundation?”

My son Andrew’s comment to that was “He is a super man.” Ditto!

Thank you so much!
- Dru

Since my transfer to Metro Health Hospital Assisted Breathing Center, I have been treated with such compassion. I am paralyzed and communicating has been difficult. You have been there trying to help me be more involved. The best gift you have given me to help me speak to friends and family has been the computer you provided me. My friends and family have to travel to visit me and the computer has made it much easier to just stay in touch. It has been a God send, and I thank you so very much.
- Kathleen

Check here for more information about our Quality of Life program.

Donna Valente
Director, Quality of Life Grants

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