I get to sit here and read all the awesome Best Mom on Wheels entries... talk about an awesome job! Here's one I want to share that I thought was pretty touching.

Elisabeth Kubler-Ross explains my mom with her quote, "The most beautiful people we have known are those who have known defeat, known suffering, known struggle, known loss, and have found their way out of the depths. These persons have an appreciation, a sensitivity, and an understanding of life that fills them with compassion, gentleness, and a deep loving concern. Beautiful people do...not just happen." Just a year ago my parents were in an accident 5 states away in Virginia, after ICU, PCU, and rehab in Virginia my mom was finally able to come home. She has worked so hard there and even harder back in Wisconsin. My Mom is the Best Mom on Wheels because she has worked not only physically but mentally. She had to miss a lot of things while she was gone including sending her youngest child off to college, but the picture included is Family Weekend in LaCrosse Wisconsin for my youngest sister. We were all able to enjoy the city and even watched the Football game! My Mother has become even more beautiful (if that was possible) through this accident. She is an amazing woman and deserves to be the Most Beautiful Mom on Wheels.

Think you know the Best Mom on Wheels? Well tell us about her! You have until September 9, so enter a 200-word essay, photo, and optional video to show mom all the ways her love affects you.

Enter now!

Janelle

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Starting an internship, for many, can be scary. You never know what kind of journey is in front of you, or even better, what kind of tasks you’ll be performing. I’ve heard horror stories of interns getting placed in closets with office supplies, or others where interns were simply invisible until they were needed.

Three months ago I stepped into the Christopher & Dana Reeve Foundation Short Hills, NJ office (at right) not knowing what to expect. All I knew was that I had the opportunity to intern for the Foundation. Little did I know that this wouldn’t be just an internship, it would be a life changing experience.

I remember my first days as an intern were hectic, exciting, and nerve wracking. I started with two other communications interns right as the announcement about Rob Summers and EpiStim was made. It was thrilling to see the Foundation, which I was now interning for, help people living with paralysis literally take steps forward.

As if the breakthrough wasn’t enough excitement, I had the opportunity to volunteer at Life Rolls On’s flagship program, They Will Surf Again (pictured below). If you didn’t get a chance to read my Daily Dose about it earlier, it was absolutely amazing! Not only did I get a nice tan at the beach, but I got to watch people living with paralysis throw their boundaries away and glide into shore on a surfboard.

Through all this excitement I also worked with Team Reeve and some individuals running the 2011 ING New York City Marathon, 2011 Bank of America Chicago Marathon, and the Escape from Alcatraz Triathlon. I got to listen to each one of their stories, why they were running the marathon, and what their motivation is. I can’t even tell you how inspired I am from each and every one of these dedicated Team Reeve members (maybe I’ll even run next year’s marathon!) Chris Cawley, Molly Ruben, Molly Umble, Matt Bledsoe, Mike Buckley, Kathy Adams, and Deedee McCarty – you are all FABULOUS people with truly touching stories.

Here’s the fun project that I like to call, my child (no really, ask Rob and Janelle, it’s my child), it can also be known as the 2011 Holiday Gift Guide for People Living with Paralysis. I still like “my child” better. This project has been such an astonishing experience. I got to surf the internet all day long looking for products and even got some free samples for community members to test out. Keep a look out for my child ... err… I mean the Gift Guide and some great products.

Don’t worry, my journey doesn’t stop there! What would an incredible internship be without a benefit concert to attend? Well maybe just an internship, but hey this is one of the many things that’s made it unforgettable. Attending Reeve Rocks at Tenjune in New York City allowed me to see Jesse Ruben and Parachute perform, but what’s even better is I got to see how many people support the Foundation. Now, full disclosure, I am a 21-year-old college student, but I LOVE my sleep! With that being said, staying out late on a work night is not what I usually do. But for this event, I put my big girl pants on and ignored my bed time. What shocked me was how many people, who probably had work the next morning, came out to support the Foundation. It never fails to blow me away each and every day how many people are willing to give.

What an exciting three months, right? I know, I know, you’re probably asking why I would ever end my internship after great experiences like those. Well, I asked myself the same question, so I decided not to. Rather than getting placed in a closet and ignored by my supervisors, I decided to stay as a volunteer so I can continue to absolutely love what I do every single day I walk into the office. (Team Reeve manager, Leigh, and I pictured below at Reeve Rocks.)

I’ve had experiences that hurt and changed my life, but I don’t know if I would be able to stay strong through a spinal cord injury resulting in paralysis. Having to relearn the way things are done in life is a curveball that no one would choose, but to every single person that has done it, I give you more credit than I could ever explain. This Foundation has shown me what true strength is. From interviewing those running marathons and hearing each of their stories, to selling raffle tickets at a benefit concert, each event has been a journey within itself where I’ve learned what “strength” really means.

I gained more knowledge in these past three months than I thought I would. I look forward to my journey as a volunteer, but I would like to leave you with a few snippets of a recent Team Reeve interview I did. Deedee McCarty’s son, Nate Bibaud, was injured in a car accident. At 27-years-old he is now living with paralysis, but the two refuse to settle for life in a wheelchair. Her endless advocacy truly touched me. Maybe it’s because her love and determination for her son remind me of my own mother’s, but she gave me chills during our interview and here’s why …

It’s made him and I closer, but I wouldn’t wish it on my worst enemy … Just to watch your child struggle and not being able to do things. He was just getting ready to soar. He had an architectural job offer on the table. He was just getting ready to fly.

Ultimately, we are not settling for life in the chair. The ultimate goal is to get out of the chair. That’s the forefront of every day. Some people may think that’s a little bit of denial, that you just need to accept it, but you don’t need to accept it.

Christopher Reeve taught everybody to dream the impossible. We have a goal and we are not stopping short of it.

A mother’s love is the secret. My love for him and what I want for his future drives me to keep building relationships, connecting with people, putting more people together, and letting people know what he’s going through. It’s just being a tireless advocate, that’s really the key.

Christine Fanning
Reeve Foundation Communications Intern

PS: Find out how to become a Reeve intern.

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The New England Regional Spinal Cord Injury Center is holding a free webcast and live chat on September 26 at 6:30pm eastern time. Presented my Andrei Krassioukov, MD, PhD, FRCP, the webcast will address low bone mass, or osteoporosis, is a secondary medical condition associated with SCI.

Many individuals with SCI have a change in their bone mass in the first year following SCI, and that risk increases over time. Research has shown that management of bone health should begin early following SCI because individuals with SCI are at a higher risk for fractures due to this decline in bone density. During this lecture, Dr. Krassioukov will discuss the physiology and architecture of bone and the changes that take place in bone mass following SCI. He will also present the common methods for evaluation of osteoporosis following SCI and discuss the difficulties individuals with SCI face in managing osteoporosis.

Dr. Andrei Krassioukov graduated medical school in the Former Soviet Union and practiced neurology in Tallinn, Estonia prior to his move to North America in 1991. He is a clinician-scientist with a well established track record in the area of autonomic dysfunction following SCI. He is the Associate Director and Scientist at the ICORD, and Director of Autonomic Research Unit, as well as a Staff Physician in the Spinal Cord Injury Program at GF Strong Rehabilitation Centre at the University of British Columbia. Dr. Krassioukov also serves as Adjunct Professor in the Department of Physical Medicine and Rehabilitation at the University of Western Ontario in London, Ontario.

Dr. Krassioukov has pioneered investigations on plastic changes within the spinal autonomic circuits using animal models and human spinal cord tissue. His research is supported by grants from the Heart and Stroke Foundation, Rick Paralysis Foundation, the Kentucky Spinal Cord and Brain Injury Research Initiative, and the Paralyzed Veterans of America Research Foundation. During the last five years he has published more than 30 peer reviewed manuscripts, book chapters and reviews. He is a member of numerous advisory boards for international agencies involved in research in the area of spinal cord injury or disability. He is also a sought after presenter at national and international conferences.

Click here to register now!
 

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Rob Summers was known for having what they call a 12 - 6 curveball. It's the nastiest pitch in baseball. "That's the one that breaks straight down, clockwise," he says. "I also had a mid-90s fastball and a very effective cutter. I had gone in as a starter but because of my velocity and ball movement, I was moving toward being a closer."

In July of 2006, Summers, not yet 21, was playing for the Aloha Knights, based in Portland, OR, part of the West Coast Collegiate Baseball League. He was headed toward his junior year at Oregon State, which had just won the college World Series. "Ever since Little League it had always been my dream to play professional baseball. I was in the best shape of my life, pitching as well as I ever had, and continuing at that rate, I was expecting to be a key player on the college pitching staff. Everything would have fallen into place for the Major League Baseball draft the following year."

Pro ball wasn't meant to be. That July Summers was mowed down by a hit and run driver. He was spinal cord injured, paralyzed below the chest.

Read the Q&A with Rob.



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On Tuesday, the East Coast was hit with a surprising earthquake. I personally didn't feel it (I feel jipped!) but I would say just about everyone from Virginia to Jersey and beyond did. So this got me thinking, for those living with disabilities, how do you care for yourself during natural disasters?

This may be a question for those living in areas more prone to quakes and hurricanes, but still I wonder. What kind of care issues come up? Are you sure to always be fully stocked? Do you have emergency numbers on speed dial? Are neighbors alerted that you may need assistance in the case of emergency?

Share your tips with us and even better, if you have a specific story when this may have happened to you, do tell please!

Join the discussion!

Janelle

UPDATE: Here's wishing everyone is okay after Hurricane Irene swept over the East Coast this past weekend. Share with us your survivor stories!

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On September 7 at 1pm (EST), join Gary Karp for a free webinar, "Adjusting to Paralysis."

Becoming paralyzed is a sudden and jarring life experience that changes the course of one's life. At first, it is all but impossible to form a vision of what that life will be, of a path towards a future that is satisfying, much less meaningful. Yet thousands of people have moved forward from that point of trauma, regardless of how devastated they felt at the time, to a full life. How does that work?

Gary Karp went through that experience 38 years ago at the age of 18 when he fell from a tree and became paraplegic at the T12 level. He has since written books and articles and spoken extensively on disability. In 2007 he was inducted into the Spinal Cord Injury Hall of Fame as a disability educator. In this one-hour webinar Gary will share what he's learned about the process of adjustment to paralysis.

The session will look at:

Inaccurate and limiting beliefs people bring with them into the initial adjustment process
Various coping styles which carry us through the first stage of the process
The role of family and friends
The critical importance of making the most of a rehabilitation stay
The need to grieve in one's own way
The innate nature of human beings to adapt and normalize

Over and over, people who couldn't imagine it at first have found their path to a new–or modified–future vision of their lives. And then lived it. All too often, they had to labor under beliefs and fears that turned out to not be true, or which they found they were able to transcend.

Join Gary Karp for this important and profound session designed to help people who have recently acquired paralysis to engage in their own adjustment process and move forward to the life that is possible in their own best possible time.

Register now!
 

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Join Julianne Moore and Stefano Tonchi in recognition of Spinal Cord Injury Awareness Month on Wednesday, September 7 at the Mondrian Soho. From 7pm-10pm, enjoy cocktails, hor d'oevres, and music by Moby with the Reeve Foundation Champions Committee for a night of fun.

Tickets begin at $200.

Click here for more information and to purchase tickets now.


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Join the Paumanok Veterinary Hospital for a day of great photos for a great cause on Sunday, September 25th!

We are thrilled to report that longtime friend and Reeve supporter, Dr. Deidre Hensen of Paumanok Veterinary Hospital is hosting one of our favorite annual events, Pets Over Paralysis! Bring your cats, dogs, birds, ferrets, rabbits, or any other family member for a professional portrait sitting All of the proceeds from this event will go to support research towards a cure for paralysis in people and animals.

The event will benefit the Christopher & Dana Reeve Foundation and The Center for Paralysis Research at Purdue University School of Veterinary Medicine.

Paumanok Veterinary Hospital, P.C.
639 Rt. 112
Patchogue, NY 11772

Photo sittings by appointment, starting at 10:00 AM. To make an appointment please call 631-475-1312.

Photo packages are offered for a donation of $90.00 (1 8x10, 2 5x7 & 8 wallets).

If you can’t make the photo shoot, but would still like to support the cause, donations will gladly be accepted!
 

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Reeve Foundation friend and Canadian fashion designer, Izzy Camilleri was recently praised for her adaptive clothing.

It's not every day that a designer is hailed as a pioneer, but that's exactly what's happening to Izzy Camilleri. In creating a new line of adaptable (and fashionable) clothing specifically for men and women who use wheelchairs, the Canadian designer is trying something that's never been done before.

The average piece of clothing sold in stores is designed for a specific look and feel when worn standing, which is why off-the-rack items usually don't work well for people who use wheelchairs. For those with limited mobility, the task of finding clothing that is easy to put on - and looks good - can be overwhelming. According to a study initiated by the Christopher & Dana Reeve Foundation, nearly 1 in 50 people are living with paralysis and 84% of those injured are between the ages of 18 and 34 - a typically style-conscious demographic that doesn't want to be overlooked by the fashion world.

"Izzy Camilleri's new line is setting the bar for adaptive fashion," notes Peter T. Wilderotter, President and CEO of the Christopher & Dana Reeve Foundation. He claims that the designer's line is "providing individuals living with spinal cord injuries and paralysis the opportunity to wear functional, thoughtful clothing which is not only easy to wear, but fashion forward."

Read the rest!

Check out IZ Adaptive Clothing.

Janelle

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Our 2011 Best Mom of Wheels contest is well under way and already we have some great submissions. Here's is part of one that is very touching submitted by her son, Devan.

My mom was born with Spina Bifida, and was nine to live. She was also told she would never have kids, or lead a normal life. I'm here to tell you she has done it all and I mean all! My mom is the most amazing person I know and I feel blessed to be her son. She has always taught me to accept people for who they are and not what they may look like. When I was younger she took me to the Wheelchair Olympics and surrounded me around all types of people. I really never looked at my mom as someone who used a wheelchair, because she could do anything anyone could, sometimes even better.

Inspired? Think an awesome mom you know living with paralysis has a chance of winning? Then nominate her now!

We're looking for mom who demonstrate love, compassion, and most of all who demonstrates life without limits! A 200-word essay, photo, and optional video should be submitted at ChristopherReeve.org/BestMom no later than September 9.



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The Christopher & Dana Reeve Foundation sponsors the Abilities Expo's nationwide. Please join us at the next expo in Houston, Texas on August 26-28th, 2011. The expo is FREE and will have vendors showcasing the latest products and services for the disability community, informative workshops that will keep you in tune with the issues that most resonate with our community and various events and activities that may include adaptive sports, dance performances, gravity-defying stunts, technology showcases, canine assistance demos etc.

Be sure to stop by the booth for some free information about all that the Paralysis Resource Center offers. You can pick up your free copy of the Paralysis Resource Guide, too. (It is literally exactly as it sounds -- a comprehensive book of all things paralysis!)

Hope to see you there!



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Being from Jersey, Eric LeGrand is somewhat of a hometown hero to the general area. That stretches from young kids playing Pop Warner football, to the paralysis population, to Rutgers nation... and well, it even goes all the way up to the NFL.

When LeGrand visited the Reeve Foundation's Short Hills, NJ offices a few weeks back, his smile won each and every one of us over. That same smiled carried over to the NFL's New York Jets this week, too.

After Eric LeGrand watched the New York Jets practice Thursday afternoon, they beckoned for the young Rutgers player from the middle of the field.

He pointed his motorized wheelchair at the scrum, which soon enveloped him. After some words, former Rutgers teammate Jamaal Westerman handed him a green Jets football jersey with the No. 52 and the name LeGrand sewn onto the back.

For one afternoon, he was one of them.

"It's unfortunate I got here, but also fortunate at the same time," LeGrand said, "being able to inspire a bunch of people like I've been able to do. It's truly a blessing and very humbling."

LeGrand has a lot of reasons to like the Jets. Westerman visited him three times a week after his initial injury, and Bart Scott should soon cut a check for LeGrand, since the linebacker made some of the proceeds from his "Can't Wait" T-shirts available to the Eric LeGrand Patriot Saint Foundation. (Jane McManus photo)

Read about the rest of LeGrand's visit with the Jets.

Janelle
 

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Hear that? It's the sound of school bells ringing and school doors opening. Okay, well almost. Within a few weeks kids will be packing their book bags with pencils and notebooks getting ready for the start of a new school year. What does it mean for students using wheelchairs? Learn from students of all ages what it means to them.

Here's a snippet from Florida high-school student Arielle Rausin (pictured).

Arielle doesn't let her wheelchair stop her from being active. "I am involved in track, which I love," explains Arielle. "And this year, I am in marching band. The wheelchair gives me a unique edge when I have to audition or try out for anything. The downside is sometimes people are afraid of change. So they will not let me participate in certain activities."

Often times, Arielle's wheelchair is a helpful conversation starter. "They see me do a wheelie, for example, and think its cool," says Arielle. "They want to know how I do it. Or sometimes, if I'm going up a hill, a complete stranger will give me a little push to the top. A friendship begins from that."

"I just try to make the best of it," says Arielle. "And be like everyone else in high school. I just go with the flow. I'm always more excited than scared to start a new class."

Read more. 

Happy school days everyone!

Janelle

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Time to play ball... Wiffle ball that is!

Reeve Foundation partner the Travis Roy Foundation, who are dedicated to provided adaptive equipment and finding a cure for spinal cure injuries, held it's 10th Annual WIFFLE Ball Tournament this past weekend at "Little Fenway" in Vermont raising over $406,000.

Little Fenway hosts charity Wiffle ball tournaments. The most popular is for the Travis Roy Foundation.

Roy is the Boston University hockey player who suffered a freak accident just seconds into his first collegiate game in 1995, leaving him paralyzed.

"I've met a lot of great people since my injury," Roy said.

The BU grad summers in Vermont and has become close friends with the Little Fenway creator and many of the 24 Wiffle ball teams from all over New England in the weekend-long tournament.

"To know there are that many people thinking about you, caring about you, and wanting the best for you, it makes me want to live up to that," Roy said.

Watch the video and read more.

More on the tournament here.

The Travis Roy Foundation in conjunction with the Reeve Foundation's Individual Research Grants Program helped support Eun-Mi, Hur, Ph.D. Her project covers regulation of axonal regeneration by manipulation of growth cone cytoskeleton. Read about it more here.

Janelle
 

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One of my favorite Quality of Life Grant recipients is Shane's Inspiration. Their mission "is to create inclusive playgrounds and programs that unite children of all abilities." I had the chance to speak with them a few weeks ago about their programs we have funded.

A park in New Jersey reminds me of Shane's as it welcomes all disabilities.

Paralyzed in a car crash 17 years ago, Daly made it her mis­sion to make the environment as accessible to the handicapped as it is to those without disabilities. “I have this unique perspec­tive: I lived half of my life as a normal person, and half as a handicapped person,” Daly said. “It is frustrating that there are places a handicapped person cannot access. There are also a lot of places that won’t take groups with severe disabilities.”

The MarshAccess Program, integrated into the Richard W. DeKorte Park, is one of a kind, said Neesha Gayle, a group leader with the Bergen County Special Service Careers Through Technology program.

The trails, including Marsh Discovery and Shorewalk, are among the few Americans with Disabilities Act-accessible trails in New Jersey, and the only ones with features catering to those with learning disabilities, visual impairments, hearing deficien­cies and physical handicaps.

Learn more.

More about Quality of Life Grants.

Check out some resources on playground accessibility.

Janelle

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