Saturday, September 18, 2010 marked the 1st Annual Reeve Foundation Connecticut Chapter Roll-A-Thon.

The weather was beautiful, the crowd enthusiastic and the competition ready to roll. About 200 people gathered in Bushnell Park in Hartford, CT (the nation’s first public park) with the goal of raising awareness and funds for the Reeve Foundation’s mission of curing spinal cord injury and caring for those living with paralysis.

The course, a 1/2 mile flat field accessible loop around the perimeter of the park was open to all who wished to enter, provided that one member of each foursome completed the course in a wheelchair. It was a phenomenal way for able-bodied participants to begin to understand the physical demands of being in a chair. By lap number 2, most of them had broken out into a serious sweat!

The Connecticut Chapter did a tremendous job planning and executing this event, everything about the day was great. The food, raffle and live music helped keep the energy up. A real live Superman and different activities allowed even the youngest attendees to take part in the fun.

Everyone got involved, new connections were made, and most importantly everyone had a blast. A big thank you to all of our participants and sponsors who helped the Connecticut Chapter raise a staggering $40,000! I’m already looking forward to next year.

Katie Prendergast
Regional Events Coordinator

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Dr. Dan Gottlieb is the resident psychologist in our community - Healing the Mind and Heart. We're proud to say he was published on the Huffington Post this week.:

My 10-year-old grandson Sam is like most grandchildren -- the most beautiful, kind, intelligent and wonderful child in the world. In addition to all of those things, my Sam is on the high functioning end of the autism spectrum, so his view of the world is a bit different from ours. But I think sometimes he sees things more accurately because his vision is not contaminated by assumptions and distractions.

When he was about five-years-old, he loved running around in the bamboo shoots that grew near his home. One day when he was running through the bamboo with his father, he stopped short and -- looking at his father and with eyes as wide as saucers -- he said almost in a whisper, "Daddy, look at how little we are."

The emotion Sam was experiencing is awe. Think about it, theologians pray for awe and it's quite possible that the act of prayer itself is a search for awe. Don't most of us work hard all year so that we can take a vacation to a beautiful place just so we can see nature's beauty? We search for awe.

Read the rest.

Rob
 

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Kathie Lee Gifford is hosting this years' Born for Broadway Musical Revue!

Monday, October 4th
New World Stages
340 West 50th Street
New York, NY
8 – 10 pm

An exclusive ticket price of $31.50 is being offered to Reeve supporters only!
Tickets at this price can be purchased by using this dedicated link.

The 2nd Annual Born for Broadway will feature the work of Tony nominated Director Marcia Milgrom Dodge (Ragtime), Musical Director Larry Yurman (Grey Gardens) and the following esteemed performers:

Adrian Bailey, Jim Brochu, Brandi Burkhardt, Ben Cook, Christopher Cox, Quentin Earl Darrington, Erin Davie, Malcom Gets, Josh Grisetti, Jermemiah James, Leigh Anne Larkin, Lesley Gore, Chad Kimball, Carole Lasser, Jamie Laverdiere, Eliza Hayes Mayer, Jeff McLean, Kathleen Monteleone, Christiane Noll, Orfeh, Robert Petkoff, Chris Pinnella, Sarah Rosenthal, Kaylie Rubinaccio, Christopher Sieber, Bobby Steggert, Ali Stroker, John Tartaglia, Josh Walden, Noah Weisberg, and Lillias White.

For all inquires, please contact Rebecca Wasserman, Manager, Donor and Volunteer Relations at Rwasserman@ChristopherReeve.org.

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This today from the Washington Post:

Scientists reported Thursday they had developed a technique that can quickly create safe alternatives to human embryonic stem cells, a major advance toward developing a less controversial approach for treating for a host of medical problems.

The researchers published a series of experiments showing they can use laboratory-made versions of naturally occurring biological signals to quickly convert ordinary skin cells into cells that appear virtually identical to embryonic stem cells. Moreover, the same strategy can then coax those cells to morph into specific tissues that would be a perfect match for transplantation into patients.

Read the rest.

Read the scientific paper.

Visit the Foundation's stem cell research center.

Rob

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Here I am at the second day of the Association of Rehabilitation Nurses (ARN) Conference. The weather is gloomy here in Orlando, but the attendees, nurses, and exhibitors are all in bright spirits.

Last night was the first official day of conferencing, and between then and so far today, a number of people came up to the Reeve Foundation booth for various reasons. Some just to say hi and thanks for being here; some to tell us one of our Ambassadors, Scott Chesney, hello and what a great job he did speaking in Houston; some to tell us about the ongoings of a Quality of Life grant they received, others to simply praise Christopher and Dana; and some to find out more information.

What I've learned most of all so far about the Foundation simply by being here, is how much of an important resource our Paralysis Resource Guide (PRG) really is. I always knew the PRG was well, a resource, but this ARN conference has taught me that people from all over the country and and different rehabilitation centers use it as a valuable tool for people living with paralysis.

The PRG consists of over 330 pages of useful information for the consumer. Click here to view the online version or go here to fill out a form to order your copy today. (It comes in English and Spanish).

Time to go back to exhibiting! Don't forget to order your PRG today!

Janelle

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A federal appeals court said Tuesday the Obama administration can continue to fund embryonic stem-cell research, reversing for the time being a trial judge's injunction barring the funding.

The one-page order by a three-judge panel of the U.S Court of Appeals for the District of Columbia Circuit said the administration met the legal standard for a stay of the injunction, but didn't discuss the case in detail.

Read the rest on the Wall Street Journal.

Learn more about the role of stem-cells in SCI research.

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The United States Department of Health and Human Services recently announced over $68 million in grants to help individuals with disabilities and their caregivers make more informed decisions about their health and long-term care options.

These grants, made possible by the Affordable Care Act, are going to states, territories, tribal and community-based organizations. The funds will be used to help seniors and individuals with disabilities and their caregivers make more informed decisions about their health and long-term care.

Specifically, the funds will be used to help families: understand their Medicare and Medicaid benefits; navigate options for long term care including community-based services that can help individuals remain in their homes; and assist those transitioning from nursing or rehabilitation facilities back home to put the supports in place to make that transition successful.

Find out more about this grant.

Find out what you need to know about paralysis in our Paralysis Resource Center.

Rob

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For over 13 years, the Christopher & Dana Reeve Foundation has fought to bring attention to the issue of lifetime limits and the devastating impact they have on families suffering from catastrophic injury or illness. On the six month anniversary of the enactment of the Affordable Care Act, regulations were released that ensure that these families never again have to worry that they will lose their insurance because of the high costs of their treatments.

Among these regulations is a prohibition on the use of lifetime limits in all health plans and insurance policies issued or renewed on or after September 23, 2010. In addition to lifetime limits, the regulations also phase out the use of annual dollar limits over the next three years until 2014 when the Affordable Care Act bans them for most plans.

Become an advocate for the Reeve Foundation.

More in what parts of the health care laws have just gone into effect.

Rob

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From Miami to Orlando, I am now at the Association of Rehabilitation Nurses Conference. Though the actual exhibiting doesn't begin until later today, I have already noticed some things over the past few days of my Florida trip worth mentioning.

First, let's talk about the airports and wheelchair accessibility. I noticed a lot of wheelchair users that I probably would have never taken a second look at before working with the Reeve Foundation. In Newark, Miami, and Orlando airports, I saw wheelchair users. Some manual, some power. I even noticed a man in a manual wheelchair having trouble putting his luggage on the scale in order to check it. It took about five minutes before an airport representative came to his assistance.

Next up, the marvelous Dolphins vs. Jets football game at Sun Life Stadium in Miami on Sunday evening. Aside from it being an unforgettable game, even though the Phins lost, I certainly noticed different parts of the stadium that I didn't notice last time I was there, like how every few sections of the bottom and middle tiers had elevators.

During halftime of the game, I met up with a friend of mine in the stadium who is living with a spinal cord injury and using a wheelchair. What I noticed most though was something our  "Top 10 Things That Annoy People who use Wheelchairs" poll eluded to. While it wasn't one of the top 10 options, it sure was annoying seeing the puzzling looks or "stares" coming from different people of all kinds as they walked by. I suppose it might have just been curiousity or something of the unfamiliar to these people, but in any case, there were more glances than I could count.

And finally, the one that shocked me most. When reserving my hotel, I had a requested a room with a king size bed as opposed to a room with two queens. (Hey, it's only one person, why not live the life for a few days right?!) Upon arrival and checking in, I was booked for a room with two queens. After checking, the concierge did inform me they had rooms with king size beds available, but they were handicapped. The conversation went something like this:

Me: Oh, no thank you, I wouldn't want to take away that room from someone who really needs it.
Her: It's okay we have plenty.
Me: I work for the Christopher & Dana Reeve Foundtion, I would feel really guilty if I did that!
Her: It'd be okay. We actually have too many of these rooms in fact.

Again, given the line of work I am, I shouldn't be surprised that not everyone sees things the same as I do, but still I was. In the end, you'd be happy to know, I stuck with the room with two queen sized beds that is not handicapped accessible!

That's all for now, I'll be sure to write again as the conferencing and trip continues!

Janelle

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What fun I had yesterday, calling the winner of our 2010 Best Dad on Wheels contest, Ben Hayes (pictured here taking a nap with his daughter). I called and left a message at his workplace, trying to sound all business like. He called back and I said that I was calling to tell him he won.

Long pause. He was truly speechless.

I asked if he even knew about it. He said some time after his wife (his college sweetheart no less) entered him, she mentioned it. He thought it was sweet of her.

He was proud and humbled at the same time.

We are proud of Ben too, and all the families and fathers that entered the contest. We had tons of entries, and thousands of votes and page views for the top 10. The hardest part was narrowing down the selection to just 10 men!

Read more about Ben and the stories of the top 10 finalists.

Here's the write-up Ben got in his local paper in Maine.


Rob

PS: We are thinking about a Best Mom on Wheels contest? Any interest?

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The age old question: What are you going to be for Halloween?

Let's start with what you were last year. Post some photos and share some ideas. Amy the Intern is doing some research at this end to find ideas on how to incorporate your wheelchair into a costume.

We'll have something for you by the end of the week including how to make this drummer outfit.

Rob

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This past weekend was Christopher Reeve's birthday. Our Facebook page is overflowing with kind words. I did want to share just one of many wonderful messages we received:

I will always remember the work that Chris and Dana tireless did for all of people with spinal injury and disease. I remember him speaking out on the nite of the Oscars, so eloquently, and then memtioning Adrenoleukodystrophy. Back then it was never spoken of and he got others inquiring and helping. When I saw our birthdays were so close, same age, I used to kid we were twins. I will always see him as the fighter he was, especially for others, not just himself. I am proud to continue his fight, as modest as I can be.

Sincerely,

Deborah
Sanger, TX

Thanks to all of you for your support and generosity. I have said this before, while I never met the man, I can feel his spirit in this place and in the people who did know him. It's an awesome power, they you can obviously feel too.

Rob

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The Washington Post has taking up the flag! They printed a piece Sunday about an issue we already knew was a huge problem because you guys told us so in our Top 10 Things that Annoy People Using Wheelchairs poll.

Number one was just that by a landslide.
37% voted as most annoying: Able-bodied people parking in accessible parking spaces.

The Post's Annys Shin did a great job putting some facts behind the issue:

In a commuter-clogged city where 25 cents buys only eight minutes at a parking meter, handicapped placards are a prized commodity. Families have been known to pass them down as if they were heirlooms. Thieves covet them: Last year, a Temple Hills man, Thais Miller, 19, was arrested for stealing placards from cars - ignoring global positioning systems and stereos - so he could sell them for $50 each.

Read the rest.

Rob

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New in the PRC Library…
Wendy on Wheels Goes to the Beach. By Angela Ruzicka. Published by author, 2010.

Wendy on Wheels is a ten year old girl who enjoys a day at the beach with her family with the use of her wheelchair. Her family rents a beach wheelchair so she can go through the sand to the water with them. The book is written for young children and was inspired by the author’s sister who has spina bifida.

A copy of this book can be checked out from the Paralysis Resource Center’s library. Please see our online catalog and borrowing instructions.

I posted this last year in the old community. Some of my thoughts two years after starting here. I didn't want the comments from our community members to get lost:

I love this picture of Christopher in his chair. Maybe, because he doesn't look injured one bit.

That chair, exactly how you see it in this photo, still sits in the lobby here in the home office. Oddly enough, no one knows how it got here.

The chair is enormous. The impressions of his body are still there. You can feel the power radiating from it, like he imbued it with a super power all its own.

It's no wonder why people are still touched by this man. He struck a chord for action, tenacity, and love that has never stopped reverberating.

Here are a few of the comments about Christopher we have seen this past week on Facebook, Twitter, and our community.

"Christopher and Dana were purely amazing and I think about them as I do my research in TBI. My previous training introduced me to patients with SCIs and mucular dystrophies; both Chris and Dana Reeve have been an inspiration."

"I still can't really believe he's gone. I still think of him, and he follows me in everything that I do. I think I had become a better person in attempt to live his dream. He helped me in so many ways, even though I never met him. He helped me to become a stronger woman after my grandfather died 9 months ago. I'll always love him."

"He (and Dana) are greatly missed! Doesn't seem like 5 years already!  The foundation has been instrumental in getting me help for my step-daughter who has spina bifida and for myself as I have have two back surgeries due to working with severely and profoundly, medically fragile children."

"Because of their strength-my daughter will walk again one day."

"I really hope that my step-daughter will look beyond her disability and see what she can do to enrich the lives of others, just as Mr. Reeve did. I am thankful for his example that she can look to as she grows older. She is very lucky, as there are a lot of children that are worse off than she is and she can be a help to others who are better off and/or worse off or who have different disabilities than hers, just as Mr. Reeve was during his lifetime. I am sure his children are proud!"

"That's what it was that I got from Christopher without knowing. Sacrifice. Christopher sacrificed himself to save others. Whether it be their emotions, mind or body, Christopher moved many paralyzed as well. When he passed on, I went quiet when I saw the news. I stared at the ceiling and tears overcame me. I was afraid, Saying  how, how did they let  him go. When you are a fan, it's hard to believe your heroes can pass on. Then I turned to my laptop , stared for a while and began typing. When I got up I asked a friend named OUTTHERE to produce a track for my lyrics to Christopher. The song was Forever Superman. My first song not about myself. It's usually about yourself, rap sometimes is about who you are and what miracals you make. But Forever Superman was the opposite, it was about Christopher and his miracles he brings. Jahid helped me make a video in my kitchen and I composite under and overlays of the movie Superman into it." Watch the video!

Happy birthday, Christopher Reeve.

Rob

PS: Read more messages or leave one of your own.

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