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This is a great story about many things, but mostly for me it means that we have to reach out and ask for what we need. ...
by Candace on Sunday, January 22, 2012
Celia that is awesome! Glad to hear your son is doing better and that the iPad was able to help with that. It's amazing ...
by JLo on Friday, September 09, 2011
My son sustained a C4/C5 SCI on 2/1/2010, right before the iPad was released. I was thinking of applications for the iP...
by Celia on Friday, September 09, 2011
Here is a video I thought you would be interested in. Here is someone living with quadriplegia that found using the Ipad...
by Crispy on Tuesday, September 06, 2011
Hi, Greetings from Blessing My name is miss Blessing, l saw your profile today and after going through it then l made ...
by BLESSSING on Friday, August 05, 2011
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We believe in empowering those affected by paralysis with the best knowledge, resources, support, and community.
Category: Quality of Life Category
Gerthro
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Posted by Gerthro
Tuesday, March 06, 2012
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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
Categories:  Quality of Life
Gerthro
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Posted by Gerthro
Thursday, January 19, 2012
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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
JLo
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Posted by JLo
Wednesday, August 31, 2011
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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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JLo
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Posted by JLo
Thursday, August 11, 2011
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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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Categories:  Quality of Life
JLo
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Posted by JLo
Friday, August 05, 2011
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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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Categories:  Quality of Life
JLo
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Posted by JLo
Thursday, July 14, 2011
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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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Categories:  Quality of Life
Gerthro
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Posted by Gerthro
Monday, June 13, 2011
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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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Categories:  Quality of Life
JLo
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Posted by JLo
Tuesday, May 03, 2011
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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

Categories:  Quality of Life
JLo
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Posted by JLo
Monday, April 11, 2011
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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

Categories:  Quality of Life
Donna
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Posted by Donna
Monday, March 21, 2011
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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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Categories:  Quality of Life