Last weekend I volunteered at the Life Rolls On event in Rockaway, NY.

The organization, based in California, inspires people living with paralysis by the way of skiing, surfing, and skateboarding. Jesse Billauer, founder of the organization was injured in a surfing accident as a teenager. He was on his way to becoming a world class surfer and was determined to continue to surf again after his injury.

By 9:30 a.m. a section of the beach was filled with excitement. It was a beautiful, sunny day. Colored banners were displayed indicating the three teams which included land and water volunteers, surfers, and participants. Sarah Donaldson, LRO Program Manager, led the event for all. The waves were manageable which is the first and most important factor in determining if it is a good day to proceed. There were 27 participants or 9 per team. Each participant was transferred from his or her wheelchairs to the surfboard. Six volunteers surrounded each surfboard and carried the person out to the ocean. The facial expressions were so great. As the person got closer to the wave and upon completion of the surf to land. Many had done this for the first time.

I was very curious as to how someone living with paralysis can stay on a surfboard, or if not, how he or she dealt with being tossed in the water. I must have seen at least half a dozen fall in and come out in an instant with the help of the volunteers. A couple of times I saw the facial expressions only get better! Signs of joy and freedom were displayed throughout the event.

Now I can call my brother, Vinny, to encourage him to participate. He became paralyzed in the ocean which left him with a C5 level of injury, quadriplegia. The next opportunity for him would be in La Jolla, CA in September. I also had the pleasure of speaking to David McCauley (pictured) who participated that day. His level of injury is C4, quadriplegia. David smiled from the moment he was placed on the board to the moment he came ashore after a couple of flips in the water. First time experience with an incredible outcome. He wants to do it again. David has his own organization called the David J. McCauley Fund to Cure Paralysis.

A very positive day for those who have been given an incredible opportunity and for those who witnessed it as I did.

Thank you Life Rolls On! 

Sonja
Assistant to Director
Quality of Life Grants

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There is just one day left to nominate that awesome dad you to be named the 2010 Best Dad on Wheels! Nominations for our summer long search end tomorrow so be sure to enter your dad, or any other dad you know who is living with paralysis, into our contest.

I’ve had the pleasure to read a handful of the entries thus far and am truly amazed at not only the dedication dads have, but the desire of the people nominating them to tell their story.

Here's part of an entry that came in about dad of four, Paul Mahoney (pictured).

He seems small in his wheelchair, but my Dad is a giant. I have never seen him walk because he broke his neck in an accident at 21, yet I look up to him as a great father, trial attorney, and community leader who mentors other accident victims.

Watching him, I have learned respect for all people, and I have learned about faith and perseverance. Because I was four when he finished law school, I saw him build his own law practice by taking difficult cases for injured clients who often had nothing.

Wh not tell the world about the amazing dad on wheels you know? Time is running out, get your entries in! And good luck!

Janelle

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As I approached the Kessler Institute on Tuesday I thought “is this the place that Christopher Reeve received rehabilitation?” Wow, now I am here to observe what he began for the disabled who have hope in the recovery process. . . even more amazing.

The NeuroRecovery Network (NRN) is set up in such a way that is inviting to those who go there. A very warm and motivated environment in which people who go there can feel “at home”. At home in the sense that they can work on themselves and know that all who surround them want the very best for them in their recovery process. A home in which there is a sense of peace while there is a nurturing environment in which to gain as much as possible while not being distracted. It is a team atmosphere that anyone who is striving for a positive common goal can work on in their own time without any pressure. Just do it and do it at one’s own pace.

This is how Michael's outlook is.. Michael (pictured) was injured in a skiing accident a couple of years ago. He has an incomplete C4 level of injury. He drives every day for 2 ½ hours each way from Pennsylvania. As I watched Michael using the “NRN” I sensed the strong determination and motivation. He was set up by his Kessler “team” on the harness while his legs were being moved on the treadmill. This movement is done for one hour with a break by the half hour. This was Michael’s 84th visit since April of 2010. Wow! What determination! He also has the support of his family and friends. We also met his Physical Therapist, Buffy, who has been with Michael since being at Kessler following the injury. Michael stated that “the Christopher & Dana Reeve Foundation with the help of Buffy are the driving forces that have brought him to this level of recovery”. Following the treadmill Michael proudly showed everyone how he can now stand on his own for about a minute at a time. He is also able to sit out of his wheelchair without falling from side to side. He has accomplished these two events in less than six months! In addition to this, he is also off of Baclofen which has been used for spasticity. This in itself is a miracle!

Overall, I am very impressed with the NeuroRecovery Network. It is one thing to read about this program or view it online. However, when one has the opportunity, as I did, to actually view it in person, one has a totally different outlook on the recovery process. This is the beginning of something greater within the recovery world. A piece of scientific research that participates in the big picture of hope. I am glad that I can share this experience with you. I hope that I have given more reason and inspiration to those and I hope that the dreams do come true one day.

Qualifications and more about the NRN are stated here.

Sonja
Assistant to Director
Quality of Life Grants

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FC Dallas is competing with other Major League Soccer teams for a $50,000 Pepsi Refresh grant. Their idea is to help educate kids living with paralysis, and their families, about physical activities available for all levels of ability – even for kids that use power wheelchairs.

Voting ends September 20th, so hurry up and vote now!

Want to learn more? Watch this video of FC Dallas captain, Daniel Hernandez.

Join Daniel Hernandez and the FC Dallas team! Vote now and tell all your friends!

More on living an active lifestyle.

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The idea was for me to go and interview Michael Glen, the self-described "World's only paraplegic hot air balloon pilot." Not once did I think I would go up with him!

Just look at the photo. That's crazy!

So, I did the interview and was just shooting footage of him getting ready when he rolls by and says, "Follow me." We went to his truck, he reaches in and pulls out some forms, as he does he is saying, "Legally I have to tell you that you could be killed doing this, but don't worry, no one is dying today. Sign here."

I'm like, what!?

He says, I'm taking you up.

I'm like, Up where?

He says, In my balloon.

I say, Are you kidding me? I just told you how much I hate heights, and you think I'm getting strapped into that thing with my feet hanging out and just a lap belt!?

He says, You don't have to go.

I say, Oh I'm going, I'm just going to be crying like a little baby the whole time and will not be looking down.

And off we went. Watch the video.

Rob

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Across the country there are several NRN community fitness and wellness facilities accepting individuals with gait impairments related to any cause (not just SCI) hosting activity-based exercise programs designed specifically for individuals with physical disabilities.

One of them is NextStep Fitness. They are having a fundraiser in Washington, DC in October.

Please come join us for the 2nd Annual NextStep Fitness “Help Make A Difference” Fundraiser, Washington, DC. This event will be held on Saturday, October 16th, 2010 at 7:00pm at vineyard vines of Georgetown. This event is designed to unite the local DC community around an important cause, increase awareness about the lack of resources available for those living with paralysis nationwide, raise funds to enable NextStep Fitness to continue the services it provides, and to assist expansion to new communities. We look forward to seeing you and we truly appreciate your continued support!

Should be a great time.

Find out more about tickets and NextStep.

Find out more about our community and fitness wellness facilities.

Rob

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Getting injured and realizing you're seeing your friends come around a lot less, is something I've heard from people on a regular base. This is a nice peice from the New York Times (image from them, by Brian Staffuer) on the subject:

But a couple of friends disappeared entirely. During the year we spent in eating-disorder hell, they called once or twice but otherwise behaved as though we had been transported to Mongolia with no telephones or e-mail.

At first, I barely noticed; I was overwhelmed with getting through each day. As the year wore on, though, and life settled in to a new if unpleasant version of normal, I began to wonder what had happened. Given our preoccupation with our daughter’s recovery and my husband’s mother’s illness, we were no doubt lousy company. Maybe we’d somehow offended our friends. Or maybe they were just sick of the disasters that now consumed our lives; just because we were stuck with them didn’t mean our friends had to go there, too.

Read more.

We don't have a tool to help you find you friends, but we do have one to help you find resources in your area.

Rob

The National Alliance for Caregiving is seeking family caregivers of veterans for a new study. This study will provide an opportunity for family caregivers of Veterans to be heard and to improve services for caregivers of Veterans now and beyond.

The National Alliance for Caregiving is a non-profit research organization and has conducted many national research studies on caregiving.

Caregivers are: relatives, friends, and neighbors providing unpaid assistance to Veterans helping with everyday activities, including personal care -- help with bathing, dressing, or feeding assisting with medications and other treatments, transportation to doctors’ appointments arranging for services, and assisting Veterans with PTSD or TBI.

Caregivers of Veterans from World War II, the Korean War, the Vietnam War and other conflicts through the current conflicts in Iraq and Afghanistanwill be included in the study.

Find out more at www.caregiving.org.

For more on the Foundation's military outreach campaign, go here.

Rob

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I couldn't resist this story and the chance to blow our own horn. Scott Chesney works with us as one of our ambassadors. He tours the world speaking on our behalf.

Recently, he stopped over at the Jack C. Montgomery VA Medical Center in Oklahoma where he met Beverly Kohl (pictured here - photo by Keith Purtell from the Muskogee Phoenix)  -- and made an impression.

Chesney told the audience that dealing with a disability involves five steps.

“The first one is to exhaust all your fears,” he said.

Learn more about Beverly's quest to start sharing her stroy and maybe even become a motivational speaker, and hear what Scott told the group.

Rob

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The current issue of Popular Science has a great photo gallery of images called "Rise of the Helpful Machines." The second one in is of the only wheelchair with robotic arms. Rory A. Cooper's Personal Mobility and Manipulation Appliance (PerMMA) features two robotic arms programmed to help users easily perform everyday tasks like cooking, dressing and shopping.

Have a look.

Learn more about assistive technology from computers to home remodels.

Rob

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Portlight Strategies is a previous Reeve Foundation Quality of Life grants recipient who is prepared to reach out and lend a helping hand within 24 hours after a natural disaster occurs.

Take a look at this video recently featured on ABC in Charleston, South Carolina to find out exactly how Portlight helps out.

Speaking of natural disasters, click here to read learn more about how the Reeve Foundation supported Haiti relief efforts.

Janelle

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How can a Magical Event and a Horrific Heartbeat of a Moment share the same 24- hour period?

The San Francisco native, Frank Alioto can contest to the unlikelihood of such irony. Frank’s story was featured on "Breakthrough with Tony Robbins,” on NBC July 27, 2010. Click here to watch the episode on NBC.com. “Frank the Tank” a nickname that was inherited and has stuck with him since, is due to the parallel between him and the character played by Will Ferrell in the 2003 box office hit “Old School”. Both guys always tinkering with their old red camaro’s and hangin’ with the fellas. The sarcastic, dry humored mechanical engineer tells his story with a smirk; as if he has some of the answers we are all searching for as we travel down the mysterious road of life. His silence is kept, his secret remains unrevealed as he goes through the events of a day that will always be remembered as the day he had a true understanding of the famous words, “for better, for worse, for richer, for poorer, in sickness and in health”.

Frank and Kristen had been good friends for years before they started dating. The active couple was always on the go. Their travel itineraries included several road trips in their RV, 4-wheeling, motor sports, mountain biking, hiking, camping.... and the list goes on, and on. His passion for automobiles produced and altered several vehicles over the years. He describes his garage as a child would describe a toy chest, filled with jeeps, trucks, dune buggies, and scrap motor-parts that would soon have a life of their own. He showed me a picture of his jeep that he modified; it’s quite impressive, custom suspension, custom roll-cage, after market seats and beadlock wheels. Frank and Kristen could be characterized as that rare couple that continues their own interests, but yet their experiences are heightened by their unique qualities. Like true puzzle pieces that belong attached, Frank and Kristen had a good thing and knew they wanted to spend the rest of their lives together, sharing all adventures that would come their way. They were engaged for about a year and a half and ready to tie the knot on December 6th 2008 in Puerto Vallarta.

Preparing for the day that would unite the two in marriage was no different from any other couple than it was for Frank and Kristen. The planning went smoothly with the help of their strategic, organized, wedding planner with no kinks in sight for the big day. However, there was no way to prepare for the heartbeat of a moment that would occur later that evening. The week had been jam packed with adventures shared with friends and family. By the time Saturday rolled around Frank and others were ready to relax and fully enjoy the celebration they had all traveled to attend.

He goes on describing the moment his fiancée walked down the aisle to meet him at the alter. Kristen, an independent, successful woman and soon to be wife of a true “Man’s Man”, was less than amused as she approached him at the alter. She was not lit up with smiles like most brides, but rather annoyed by Frank’s actions. The attention of the guests was focused on the “Snap Happy” groom rather than the beautiful bride. Camera in hand, he thought it would be fun to document this particular moment from his view, taking over from the photographer that had been hired. He chuckles as he re-lives the moment in his mind, and then shows me some photos of the ceremony that had been saved to his iPhone.

I have come to know Frank as the funny sarcastic member here at NextStep Fitness. Although I’m back in the office most of the time and have little interaction with the clients, I always catch a glimpse of conversation on the floor and can’t help but smile at Frank’s contributions. His loyalty, generosity and thoughtfulness are also very apparent from the desk where I sit. He always brings others into the loop of entertaining dialog, no matter what the topic may be on that particular day. Willing to clown at himself and always making sure not to joke at someone else's expense.... well…at least making sure they can handle it if he does. Personally speaking, best of all are his generous avocado offerings from his avocado tree. I have become quite popular with my friends due to my amazing guacamole, Thank You Frank!!

So, back to the story, Kristen is clearly well aware and in loving acceptance of Frank’s humor, Kristen’s annoyance quickly passed and the wedding ceremony was even more beautiful than expected. The reception was magnificent, over looking the ocean, dancing by the pool and sharing the love and happiness that was so evidently present.

By the time the sun started to set, the entire wedding party was in the pool dancing, wedding clothes and all. Yes, the bride was wearing her dress and her bridesmaids were wearing matching. They were all singing, dancing, and having the time of their lives. What a blast! Wanting to be a part of the “Water Wedding Party”, Frank dove in the pool headfirst.

His head forcefully plunged into the concrete floor and within a heartbeat of a moment his C5 & C6 vertebrae were completely shattered -- leaving him with a sever case of paralysis. Memory is lost of the actual dive as well as the contact he had at the bottom. Like a nightmare, but unable to awake, he found himself in a pool of water unable to float. At that moment, Frank knew there was something terribly wrong, the feeling in his legs was completely gone and he was unable to move. He was rushed to a clinic on a backboard where he was confined all night. “That was the first time I heard the word quadriplegic in association to my condition”. He goes on to explain the panic and anxiety he lived, while painfully and helplessly spending his “Golden Hour” in that Mexican Clinic. That was night “Team Tank” was born. His friends and family showed their support immediately, making Team Tank hospital bracelets.

Frank is now confined to a wheelchair and spends 3 days a week at NextStep Fitness. A facility that was established in 2008 by Janne Kouri, a man that has also been stripped from independence. Determined to make a difference NextStep Fitness partnered with the Christopher and Dana Reeve Foundation’s NeuroRecovery Network to bring cutting edge training methods, procedures, and technologies to rehabilitation for people suffering from paralysis. NextStep Fitness’ mission is to provide community-based, state-of-the-art fitness facilities for individuals suffering from paralysis at an affordable cost. Along with other members, NextStep Fitness has become Frank’s second home. Frank joined NextStep Fitness in May 2009, after Kristen vigorously searched for recovery options for her new husband. When he joined, he had very little upper-body movement. Christel Mitrovich, the Director of Locomotor Training here at NextStep has expressed his amazingly positive outlook, realistic personal goals and willingness to try something new. He has worked very hard on his arm movement, which was non-existent when he arrived, now able to raise both arms over his head. He is still working very hard on core strength and better arm control and looks forward to traveling more and becoming more independent in the future. The desire to get back to work was mentioned several times in our conversation as well as completing projects that were started before the wedding but now lay unfinished in his garage.

I asked Frank how this injury has changed him the most beyond the physical limitations. “Patience, I’ve never had patience,” he said. Frank explains that you cannot be impatient in his situation, it would be impossible. Waiting for others to help with simple tasks is very difficult for someone who is used to doing everything themselves. Before he was more caught up in his own life with work and other things that he now finds to be quite insignificant. The time with friends and family is a commodity that has become Frank’s first priority.

Just when you think these newlyweds have endured enough trauma, another obstacle lies in their path. This last February Kristin was diagnosed with a brain tumor. Doctors took her under the knife immediately finding a tumor the size of an orange. Only being able to remove half of the tumor, they went in a second time in May to recover the remains. Miraculously Kristen was back working full time in June shocking doctors with her speedy recovery. Frank and Kristen Alioto’s story is a compelling one to say the very least. It has captured the attention of many including, Tony Robbins who has done a special on Frank and his wife. The Tony Robbins crew followed Frank for two months including a trip to Fiji, which was his first big trip after the accident. His trip to Fiji opened his mind to the possibility to continue his travel adventures as he has come so accustomed to. They showed him the luxury was still available to him and his family, through different arrangements.

As far as “Team Tank” goes Kristen continues to stand strong by Frank’s side and family support is solid as ever. There is no slowing down “Team Tank”; the newlyweds will finally go to Hawaii for their honeymoon in November, and plan to fill their calendar with new itineraries in 2011.

Kathleen Dougherty
NextStep Fitness

The US Open of Surfing is going on through this weekend. If you are lucky enough to be cruising along the Pacific Coast Highway as you read this, stop in and visit our Life Rolls On booth. Life Rolls On was founded by a surfer, Jesse Billauer,  who was injured. Jesse is there this weekend and will be surfing.

One of the things Life Rolls On does is gets people out of their chairs and into the surf. Find out more.

Whether you make it there or not, you can still help us continue all the cool work they are doing.

Text "SURF" to 20222 and make a one-time donation of $10.00. I dare you to watch the video and not want to help out!

Rob

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Here is a nice piece from the Georgetown alum magazine about Janne Kouri. He runs NextStep Fitness in Lawndale, CA, one of our new community fitness and wellness centers.

Kouri was playing volleyball on a beach in California when he took a break and dove into the water. He hit his head on a sandbar and fractured his C5 and C6 vertebrae. “I could tell I couldn’t move immediately,” Kouri recalls. “And I was floating on my back for I don’t know exactly how long, maybe 30 seconds or something like that, and just took a deep breath because I couldn’t move at all.” An off-duty EMT saw Janne dive in and pulled him out of the water. After some time in the hospital, doctors told Janne’s then-girlfriend, Susan Moffat, that he would never walk again.

Read the rest.

Rob

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We recently posted our Top 20 Most Livable U.S. Cities for Wheelchair Users to mixed reviews. Which is perfect! Our whole point was to start the discussion. The main thing we realized as we worked through the data was that there is no nice neat collection of data to help us determine livablity. Accessible even. (We can talk about the definition of accessible some other time!)

Didn't you think there was an ADA? Offices? Employees? I was surprised to find out that the Americans with Disabilities Act is a law (which just turned 20) that is enforced by the Justice Department, not a government agency that oversaw things and process complaints. 

One of the mixed reviews came from Sue Warner. She blogs out of Twin Cities and was taken aback that her cities weren't on the list and questions our decision making process:

I’ll argue with the Reeve Foundation about how they defined the Top 20 and how they received input to make their decisions. But, it’s also a wake-up call to show us that perhaps we’re not as good as we think we are when it comes to livability for people with disabilities, especially those of us who use wheelchairs.

But Sue really gets it. That was the point. There are no stats. So let's talk about it. What does make a city livable for someone using a wheelchair?

Read more of Sue's blog.

Rob

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