Making a Difference

Young girl goes mobile thanks to QoL grant

Gerthro — Tue, 06 Mar 2012 18:59:00 GMT

I wanted to share this Quality of Life story from a 2nd Cycle 2011 grantee. Providence Child Center in Portland, Oregon received a grant of $5,000 to support the durable medical equipment loaner program.

One of the pieces of equipment purchased with the funds was a special walker that helps with therapies designed for maximizing outcomes for children with paralysis and mobility impairments. Clara is shown using the walker in her home, and the note from her father expresses her parents' gratitude to the Reeve Foundation.

Best,

Donna Valente
Director of Quality of Life Grants Read More

Getting the right wheelchair changed this man's life

Gerthro — Thu, 19 Jan 2012 18:09:00 GMT

Two years ago, while boarding a bus in the Costa Rican town of Alajuela, Francisco Javier (pictured at right in his first power chair) faltered. The 58-year-old was pushing his wheelchair up the bus’s ramp, but without arm rails or anyone to assist him he fell back, hitting his head hard on the street below. He suffered serious injuries, which even after multiple surgeries resulted in permanent lost vision in his left eye.

Though Francisco, who contracted polio when he was 1 year old, has been using a manual wheelchair for the last eight years, after his accident he found it more difficult to push himself around Alajuela. He had once worked as a salesman on the street, but he now found himself unable to run errands or meet friends as regularly as he had in the past. “From my house to the supermarket and the other shops it’s about 500 meters, and to push a wheelchair is very tiring,” Francisco said. “That also affects my sight; I get tired easily.”

Knowing that a power wheelchair would enable him to regain some of his past independence, Francisco researched the Christopher & Dana Reeve Foundation on the internet and wrote a letter pleading for help. “I had faith that I could get a wheelchair,” he said.

In October, after receiving Francisco’s request, Carlos Caprioli, Information Specialist for the Reeve Foundation, contacted UCP Wheels for Humanity (UCPWFH), which agreed to provide a donated power wheelchair for Francisco during its next wheelchair distribution in Costa Rica.

UCP Wheels for Humanity, a North Hollywood, California-based nonprofit organization, has been providing wheelchairs to developing countries around the world since 1996. UCPWFH’s volunteer teams of professional wheelchair seating specialists, including occupational and physical therapists, accompany UCPWFH on each distribution worldwide to ensure that every piece of equipment provided is custom-fitted to each individual.

The Christopher & Dana Reeve Foundation has been supporting UCPWFH’s international programs since 2000, connecting countless others like Francisco with wheelchairs and other mobility aids. Shortly after Francisco contacted the Reeve Foundation, one of UCPWFH’s 40-foot ocean containers (pictured at left) filled with nearly 200 wheelchairs, crutches, walkers and physical therapy equipment was bound for Costa Rica.

Six weeks later, a UCPWFH team arrived in Alajuela to fit the equipment to more than 185 children and adults with disabilities. Francisco received his refurbished Quickie P110 power wheelchair on Tuesday, November 22, and was already imagining all the ways it would improve his life.

Photo: UCP Wheels for Humanity volunteer CRTS Michael Banks fitting Francisco into his first power chair.

“Now I can run errands, and I don’t need anyone to help me up the bus ramp anymore,” he said. But, he added with a grin, he would mostly use his power wheelchair to go to the central park in Alajuela, where he and his other retired friends in the area meet almost everyday to gossip and talk soccer. Francisco was already discussing with his brother, Ignacio, when his favorite team, La Liga, would be playing next and where they would go to watch the game.

The impact on his independence, and social life, was immediate, he said. “There are so many people in my country in need of wheelchairs — I have a friend who tried to get a wheelchair but couldn’t,” Francisco said. “So I am very, very grateful, and would like to thank the Reeve Foundation and UCPWFH for all the great work they are doing, not just in Costa Rica, but all around the world.”

Getting the right wheelchairSubmitted by: Katherine Selengia - Program Associate - UCP Wheels for Humanity

To teach is to touch lives forever

Leigh — Fri, 09 Dec 2011 18:17:00 GMT

My dad taught in elementary school for over thirty years in the town we lived, so invariably when we went out together to the diner, the mall, or the post office while I was growing up, there was always someone calling out “Hey Dr. B!” followed by a chat to catch up with a former student or their family. To me, it felt like he was mayor and I grew up having a profound understanding of all the people’s lives he affected.

I was reminded of this feeling last night. I attended the life remembrance service for our friend Christina Symanski. I wasn’t struck by just the sheer number of folks that came to pay their respect to her family, but by how everyone talked about Christina. Almost everyone I spoke to described her as having been their teacher- and not just her former students (Christina was an elementary school art teacher just prior to her spinal cord injury in 2005), but her sister, her friends from college, her gaming buddies, even friends she had never met in person before but had advised and counseled online.Read More

iPads are being used to treat patients with spinal cord injuries

JLo — Wed, 31 Aug 2011 14:03:00 GMT

Back in April, I met Adrienne Lauer from Nova Southeastern University at the American Occupational Therapy Association (AOTA) conference in Philadelphia, PA. Adrienne was very kind when she approached the Reeve Foundation's Paralysis Resource Center booth.

She came up to say thank you for a recent Quality of Life Grant Nova had received to help SCI patients use iPads.

Here's an update about the grant:

The department, which is a part of NSU’s College of Allied Health and Nursing, is using a $13,000 grant from the Christopher & Dana Reeve Foundation to purchase 20 iPads to treat those individuals.

Because spinal cord injury victims have very limited mobility, using a desktop computer or laptop can be difficult for them. NSU researchers in occupational therapy believe that the iPad, with its lightweight, portability characteristics, as well as its touch screen, will help patients have greater access to the Internet, applications, social media outlets, music, games, GPS, and other functions.

Additionally, the iPad will make it much easier for them to read books and newspapers, which they would not have to pick up anymore.

Read the rest.

More about another grantee I met at AOTA.

Janelle

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From doctor to NRN patient

JLo — Fri, 19 Aug 2011 15:23:00 GMT

The Reeve Foundation's NeuroRecovery Network is by far one of my personal favorite programs we have. It's exciting, unique, and gives individuals back their ability to walk and much more.

One of these individuals is Stanley Yoo. Yoo (pictured center) was spinal cord injured in November 2008 after he landed on his neck on a trampoline warming up for a gymnastics class. At that time, Yoo was a resident doctor in Temple University's Physical Medicine and Rehabilitation program (PM&R) in Philadelphia, PA. As a doctor, he knew all too well what had happened.

Having spent four months in therapy, Yoo is more aware than ever that what would be seemingly small victories to everyone else, are immeasurable to the actual patient. "Function is determined by how much you put into it," says Yoo. "Going from doing flips in the air to pain in my back when I walk hardly makes you feel like yourself. It's about changing focus, reinventing yourself."

"Any victory, big or small, keeps alive that hope for SCI patients that there will one day be a cure," explains Yoo. "Every advance in pharmacology, mechanical technology, stem cell therapy, while they might not offer a complete cure, will undoubtedly have huge implications in the individual lives of spinal cord injured patients."

To really understand the life of a someone living with a spinal cord injury, Yoo says, "I would urge any non-spinal cord injured individual to take a minute to reflect on all the things that so many of us take for granted -- the ability to feel a loved one's touch, to have control over your own bowel and bladder, to move your body freely, to stand up and walk, to cough when you have to, or even simply to breath on your own. Then, imagine losing any one of those things and ask what you wouldn't do to get that back. SCI patients often have several of these deficits, sometimes all, and occasionally even more. So, while a complete cure might be a long time coming, simply improving some of the sequels of the disease is, and always will be, progress worth making."

Read about Yoo's NRN experience and his journey to walking again.

Janelle

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University receives grant for DisAbilities Sports Festival

JLo — Thu, 11 Aug 2011 20:25:00 GMT

Our Quality of Life Grants Program awards everything from arts and dance programs to assistance dogs. Here is what Cal State San Bernardino is doing with their most recent Quality of Life Grant they received totaling, $9,900.

CSUSB will host its fifth annual DisAbility Sports Festival on Saturday, Oct. 1. The event is free and will feature 22 sports, with most events being coached by current and former medal-winning Paralympians and military veterans.

Participants of all abilities can participate in basketball (wheelchair and stand-up), tennis (wheelchair and stand-up), wall climbing (all abilities), swimming (all abilities), kayaking (all abilities), martial arts (all abilities), track and field, motor skills activities, wheelchair obstacle course, quad rugby, goal ball (blind sport for all to try), beep baseball, golf, soccer, wheelchair lacrosse, dance, cycling/hand cycling (organizers will have tandem, single and hand bikes for all abilities), archery and sit-volleyball.

“We greatly appreciate the support that the Christopher & Dana Reeve Foundation has given us over the years,” said Aaron Moffett, professor of kinesiology at CSUSB and director of the festival. “Through their support, we have been able to purchase adapted equipment, which can be incredibly expensive, increase the number of participants to 700 athletes, and ensure that our program stays free for all participants.”

Read more.

Learn about the Quality of Life Grants Program.

Janelle

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Quality of Life grant helps sailors

JLo — Fri, 05 Aug 2011 17:10:00 GMT

With the announcement of the Reeve Foundation's 1st cycle 2011 Quality of Life Grant recipients, we are pleased to be getting feedback from some of the grantees.

Here is what the C. Thomas Clagett Jr. Memorial Clinic and Regatta has been doing.

For the second time in its nine-year history, the C. Thomas Clagett Jr. Regatta is the beneficiary of a grant from the Christopher & Dana Reeve Foundation. The foundation awards grant monies to non-profit organizations in recognition of programs that enable people with disabilities to live independent and active lives. The Quality of Life grant underscores the mission of the C. Thomas Clagett Jr. Memorial Clinic and Regatta which was created to allow sailors with disabilities to reach their personal competitive goals, which in turn has a direct impact on their quality of life.

“It [The Clagett] has really improved my quality of life, my independence, and what I’m going to do with the rest of my life,” said Jody Hill (Seabrook, Texas). A professional yacht skipper before his spinal cord injury in 2006, Hill frankly admits that during his first two years post-injury he was depressed and getting into trouble. That changed once he found he could get back on the water and his appearance at the 2010 Clagett Regatta was his second-ever disabled sailing race. “It’s just been a real boost for me mentally and physically.”

Read the rest.

Learn more about the Quality of Life Grants Program.

Janelle

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World's first adaptive luge team

JLo — Thu, 14 Jul 2011 17:30:00 GMT

This was emailed to me from friend of the Reeve Foundation, Tom Hernon at Back2Sports.net. (Tom is a great guy and pushes the boundaries of possibilities. Read more about him here). Targeted at young wheelchair athletes, Muskegon State Park is forming the world's first adaptive luge team which is a result of a Reeve Foundation Quality of Life Grant two years ago.

Here is Tom's email:

Attn: Young wheelchair athletes

We are forming the worlds first Adaptive Luge Team at the Muskegon State Park. This is not only the start of adaptive luge becoming a Para-Olympic Sport but a opportunity for a wheelchair athlete to make it to the Olympics, Yes I said Olympics. Luge is a very small sport that draws most of its athletes from the Muskegon Luge program. In adaptive luge we follow the same rules, it is legal to use rains and have our feet in the middle. Your strong upper body is going to give you a big advantage on your starts and your age lets you get funding from the Jr Olympic Program. You go to Nationals and win then you get to go to the Big show...

There are a lot of wheelchair sports to pick from and only so much money and time . Ask your self what sport gives you the best chance to be a Olympic athlete? There are a lot of sled hockey athletes trying out for a few spots on the National team, If you joined the Luge team you would have a much better chance at getting to the Para-Olympics and a chance to get to the real Olympics. You give it your all as a athlete and I will give it my all as head coach to get you there.

Press Release 6/27/2011

Muskegon Winter Sports Complex is now home to the worlds first adaptive luge team. The team is sponsored by Back 2 Sports, Spartan Medical, American Roll Models, Reeve Foundation and The Disability Connection of Muskegon. Team try outs are open to both paraplegics and quadriplegics and will be filled equally.

We are looking for paraplegics and quadriplegics that want to have a career as a Olympic athlete or just want to race for fun in our adult race league. The team will be training and racing at the Muskegon Luge Track in the adult race league (Tuesday nights) and several open races during the season. There are also races in Park City, Lake Placed, Calgary and Vancouver that athletes can get quantified to go to...

Once Adaptive luge becomes a Para Olympic sport our program will be the first step athletes take to make the US Para-Olympic Luge Team...

We have several sponsors for the team that are paying for the track time, equipment and transportation so it is free for anyone that has a Olympic dream and is willing to put the effort in to make it happen (or just wants to have fun). Join us January 3rd 2012 at 3pm for our free adaptive Luge clinic and team try outs. After the clinic (6pm) our new team will be racing in our first race in the adult race league.

For more info contact Tom Hernon (616)451-4716 usdluge@yahoo.com www.back2sports.net

Back2Sports Luge team

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Five years later, she's ready

Gerthro — Thu, 23 Jun 2011 13:23:00 GMT

We devote a lot of time here helping others cope and coping with bad news ourselves. Here is a letter we got recently:

To Whom It May Concern,

In 2006, my long time college friend had been body surfing waves in his home town when along came a rogue wave that crashed his body to the sand and severed his spinal column. It was unthinkable and frightening for all of us to realize this very vital man was going to be a quadriplegic for the rest of his life at 41.

I called your phone number and talked with a lovely woman at the time who gave me the reassurance that she would send me books and information to help me understand his new world and how he could live a vibrant life.

Sadly, by the time the package arrived, my friend had already passed away from further complications to his condition.

I regret not sending these back to you sooner, but I felt somehow that if I kept this box that he was still here. I realize 5 years later I am ready to let go of this box and let someone else benefit from the information.

I want to thank you again for having such wonderful supportive people to answer questions via the phone.

I hope you will forgive me for this lengthy delay.

Kind regards.

This person called the Paralysis Resource Center (800-539-7309). We get a ton of calls from family and friends.
We have a special section for people dealing with a new injury.

Rob

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Defending your rights

Gerthro — Mon, 13 Jun 2011 18:17:00 GMT

Here are two brief emails from a family that our information specialists in our Paralysis Resource Center have been helping -- Pat Durkin, who is living with paralysis and Sue Crawford, his fiancee.

MAY 19, 2011

Today, Pat, Bernadette (in charge of the foundation's information specialists), Ronnie (with our advocacy team), Pat's nurse Judy and I are meeting with Congressman Van Hollen. We are going to his office to thank him personally for his help in the appeal for Pat's DPS (diaphragm pacing system) and extended stay at Shepherd Rehabilitation Hospital last year.

In gathering my thoughts and reviewing emails for today's meeting, I remember the efforts of all you and the support you gave to us in seeking a healthier and stronger life for Pat.

Words really cannot express the gratitude for your concern and many efforts to make a difference in the outcome of Pat's recovery.

I am certain that Pat is breathing for most of the day (all of his waking hours) because of the efforts made to win the appeal from his insurance company for the DPS and a longer stay at Shepherd. He was told shortly after the accident that he would most likely never breathe on his own. Given a chance with the outcome of the appeal efforts -- he IS breathing on his own with the hopes to even wean off the vent completely! It has enjoyed the richness of having family, friends, his dog close by and being home. He now has 2 grandchildren and one to arrive shortly that he may have never met if not given that chance.

Thank you from the bottom of our hearts,

Pat and Sue

(Pictured: Ronnie, Congressman Van Hollen, his disability aid Char, Pat's nurse Judy, Sue, Bernadette.)

MAY 24, 2011

Last Thursday we had an opportunity to meet with Congressman Chris Van Hollen and some members of his staff.

Congressman Van Hollen along with others was helpful in winning my appeal to have the DPS implant and to extend my stay at Shepherd which has greatly helped in my ability to breathe on my own for most of the day. Ronnie Tepp along with Bernadette Mauro set up the meeting to personally meet and thank the Congressman. Bernadette has been with us all along this journey, a constant help and a dear friend. This was the first time we met Bernadette in person.

The Congressman was very easy to speak with and very interested in hearing my story as well as my concern for the number of serious injuries like mine that may be a result of the beach reclamation. He also showed concern for my health care insurance issues as well as recognizing the benefit of programs like the Christopher and Dana Reeve Foundation that provide support and information to families that experience a life changing event such as a spinal cord or brain injury.

Often we get disgruntled with our government policy makers and feel as though we have no voice. But my situation shows that one's voice can be heard by our government officials.

Pat and Sue

(Read what Bernadette wrote about this family and this visit!)

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Quality of Life grant helping adults with spina bifida

JLo — Tue, 03 May 2011 15:16:00 GMT

I recently attented the American Occupational Therapy Association (AOTA) Conference in Philadelphia on behalf of the Reeve Foundation's Paralysis Resource Center (PRC). (Read about my experience at AOTA.)

At the conference, I was able to meet dozens of thriving individuals in the occupational therapy field. One of these individuals was Elizabeth Ridgway, Occupational Therapy Supervisor, at the Children's Evaluation and Rehabilitation Center, part of the Albert Einstein College of Medicine of Yeshiva University in New York. Elizabeth approached the PRC booth just to say thanks for a recent Reeve Foundation Quality of Life grant they received for their project "Adults with Spina Bifida Group Outings."

The project was granted in order to "increase social engagement and community participation for adults with spina bifida living in the New York metropolitan area through participation in desired community activities." This was achieved through three objectives:

Objective 1: Increase group member's quality of life and social participation through the use of community based activities.

Objective 2: Enable the adults in the group to overcome barriers and obstacles with increased independence using self-advocacy and self-determination skills.

Objective 3: Improve the knowledge and attitudes of community workers about the needs of individuals with spina bifida and other physical disabilities.

A few days after meeting us at AOTA, Elizabeth followed up with an email:

I was so happy to see you at the AOTA national conference. It was great for me to have the opportunity to thank you and the Reeve Foundation again for the Quality of Life grant we received last year. The grant changed all of the lives of the individuals involved in the group: group members, families, caregivers and healthcare providers. It has been amazing!

When I think of "Making a Difference," I think of Elizabeth and what she told us.

More on the Reeve Foundation's Quality of Life Grants program.

Janelle

Nothing's Impossible

JLo — Tue, 19 Apr 2011 16:14:00 GMT

This Making a Difference blog is all about how we here at the Reeve Foundation make a difference in the lives of those living with paralysis. Our NeuroRecovery Network (NRN) Program helped one person so much, he decided to get a tattoo of our logo to represent just how grateful he is to be able to walk again from being part of the NRN.

Brad Burns was injured in May 2008 in an automobile accident. As many of our community members know, life changes in an instant. So after a few weeks of having feelings of anguish, Brad decided he wasn't going to let what happened to him so quickly control the rest of his life.

"It was an absolute amazing opportunity to get better," says Burns. "It's definitely the hardest thing in my life I have gone through, but definitely worth it."

Jeff Buehner, Burns' therapist at the NRN, describes Burns' function during his first session. "He was dependent on a power wheelchair," explains Buehner. "He had had minimal or no use of his right upper extremity; his left arm was starting to get mobility back, but limited; his hand function was pretty much non existent, with some gross upper extremity movement in his left arm. He had no trunk control whatsoever. During his first evaluation, it took the maximum assistance of three people to get him into a standing position. And it was a pretty ugly looking stand, as you can imagine!"

Burns set a goal to be walking within a few years, but it happened within six weeks of being at the NRN. He started with a platform walker. Burns describes the platform walker as, "essentially two attachments, one on either side of the walker, which allowed me to rest my forearms on it because I wasn't strong enough to grab with my hands and support my upper body."

Get to know Brad.

More on the NRN.

Janelle

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Living with a Disability, Living Independently, Living LIFE

JLo — Mon, 11 Apr 2011 14:53:00 GMT

Every now and then I see stories in the local news about previous Quality of Life grantees and what they are doing now. Just recently, Young Dance in Minneapolis, Minnesota was featured on their local CBS news for the work they are doing. They received an $8,000 Quality of Life grant to support one of their programs for young wheelchair dancers. Read about it here and watch the video.

Another story that made news around our offices Quality of Life grants recipient Living Independently for Everyone (LIFE) in Mississippi. LIFE is a wonderful organization who has received two grants from us. The most recent one in 2009 for an AmeriCorps project they sponsored, LINC (Linking Individuals into Neighborhoods and Communities) which assists individuals living with disabilities as they move from institutional settings, such as nursing homes, back into communities.

An earlier grant was awarded to LIFE in 2007 to replenish much of the medical and equipment supplies that were destroyed during Hurricane Katrina in 2005.

What I found from speaking with LIFE was more than just how much the Reeve Foundation Quality of Life Grants helped the organization, but by how much the individuals living with disabilities within LIFE were able to bond together.

"It [LINC] turned out to be the best thing in the world," says Dunaway. "It brings younger people and middle-aged people on board who have disabilities, and they are giving back to community. They are learning how to work as a team, learning skills they didn't have before hand, learning to work in an office environment. They leave us after a year or two, and have a whole wealth of skills they may not have had before."

Lawrence doesn't believe he would be as independent and healthy if it weren't for his experience with LINC. "It has given me the confidence to carry on with my life, which otherwise I believe would not be as good as it is now."

Learn more about LIFE of Mississippi and the Reeve Foundation's Quality of Life Grants program.

Janelle

NRN patient focusing on his future

JLo — Tue, 05 Apr 2011 17:43:00 GMT

There is nothing more fulfilling than seeing the work you do come to life. That is exactly what happened with Tony Malloy. Tony was spinal cord injured at the C5, C6 level in a snowboarding accident in January of 2010. In summer of 2010 he became a patient at one of the Reeve Foundation’s NeuroRecovery Network (NRN) centers.

The NRN is a cooperative network of cutting-edge rehabilitation centers designed to provide and develop therapies to promote functional recovery and improve the health and quality of life of people living with paralysis. Click here to learn more about the NRN.

I was able to visit Tony at the NRN during one of his therapy sessions at Kessler Institute for Rehabilitation in West Orange, New Jersey. Just being there seeing him in action, seeing his therapists push and pull his legs as he was suspended over a treadmill, seeing the determination everyone had was truly inspiring. I was witnessing Tony re-learn how to walk.

One of Tony’s physical therapists, Jared Milligan had said, "I've definitely seen a lot of change in Tony since joining the NRN. He's gotten so much stronger. From the first day he's been here, as of now, it's been leaps and bounds. If he keeps working, he's going to keep improving, and that's what we like to see. He has a good attitude toward it and he's focused. The focus is not on the past, he is looking ahead. He wants to get where he needs to be, and he will if he keeps doing it the right way."

To not only be able to write Tony’s story but to meet the person behind the story made it that much better.

Meet Tony.

Janelle

Building warriors on wheels

Leigh — Thu, 31 Mar 2011 15:14:00 GMT

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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