Ruben Rios, Reeve Foundation Ambassador shares about his weekend at the Spinal Cord Symposium

The Spinal Cord Symposium was a very classy event. The Sheraton Wild Horse Pass Resort & Spa is gorgeous. The ambience, decor, and location made me feel like I was on Fantasy Island. The staff/service is super friendly, too! Only wish I could have stayed a couple of weeks.

We got off to a very auspicious start on Friday. Being that we left two hours later than I'd wanted, we hopped right on the freeway to "make good time". About two and a half hours later, we ran out of gas in the middle of nowhere. (20 minutes west of Blythe) we got caught in the middle of one of those 1 hour stretches (on the 10 Freeway) where there's no civilization, much less a gas station in sight. Probably should have filled up before we left. That delayed us an hour, not to mention the hour I neglected to factor in for the time zone differential. UGGH! We arrived at 7pm and missed the opening reception (6pm). We went straight to our room, unpacked and tried to rest up for Saturday.

The next day (Saturday), we had a light breakfast and hustled over to the Symposium. We set up some artwork (for display) and got right to work. We met some of the guests who stopped to check out the art and see how I paint. Super nice people!

At 11am, we went over to one of the conference rooms, where a "Town Hall Meeting" was taking place. There were three pairs of people, on stage, being interviewed about their post spinal injury experiences. After the host interviewed them about their injuries and subsequent lifestyle changes, there was a question and answer session with the audience (comprised of mostly doctors, scientists, researchers etc.) I learned a lot just sitting there and listening. It was a privilege to be there at a time where these professionals, who are dedicating their lives to making spinal cord injuries easier to live with, and ULTIMATELY working towards a cure for paralysis, were able to meet, interact and see, firsthand, those of us who are to benefit, someday, from their work. When Dr. Doug Landsman invited me to the Symposium, he explained that one of the goals was to unite these brilliant scientists/doctors with some of the spinal cord injured community so that they could see who we are and make the fight for a cure more personal. Many of these brilliant guests came over to where I was to see and ask questions about my work. Very down to earth, wholesome, genuinely sincere people who praised me for what I was doing. To say I was flattered is an understatement.

Another highlight was the "poster room". The poster room was a conference room set up with aisles and aisles of these huge posters which the Doctors/scientists brought to display. Some of the things on these posters, included pie charts, studies, analysis and results from research which each party was working on. Some were very technical and impossible for a layperson, such as myself, to understand but what's important is that these scientists were put together in a unique opportunity to share ideas with one another.

Awesome! There's power in numbers. After seeing that, I came away even more optimistic that, someday, Christopher Reeve's dream will come true and paralysis will be a thing of the past.

Sunday, we went over to the conference area, painted a little bit more, and oh yeah...a friend, Paul Mortensen, who runs a nonprofit, “Wheels Towards a Dream” bought one of my pieces. (Monaco) By noon it was over, we said "so long" to our friends from the Reeve foundation, packed up our stuff and departed for Los Angeles.

When we got back home I woke up feeling sore all over from the long drive, but I'd do it again tomorrow if given the opportunity. It was an eye opening, positive experience which gave me hope for the future. Especially for the spinal cord injured people of the future. I'd like to express my gratitude to Dr. Doug Landsman (Director, Individual Grants Program Christopher Reeve Foundation), Joseph Canose (Senior Vice President, Quality of Life, President, Life Rolls On Subsidiary Christopher & Dana Reeve Foundation) and Peter Wilderotter (President & CEO) for putting this all together and inviting me to be a part of it all.

Ruben

As I mentioned in a previous posting, this past weekend was the Keshet Dance Company’s  performance of Nutcracker on the Rocks. The performance was absolutely amazing!

While watching this performance I was reminded of the wonderful stories which I heard about the late Dana Reeve who was always a great supporter of the arts.

In this version of the Nutcracker there were 5 performers who used wheelchairs and they brought the snow scene to life.

Congratulations to all of the performers at the Keshet Dance Company for putting together and amazing show.

-Priti

Ruben Rios, Reeve Foundation Ambassador and Scholarship Holder with the Association of Mouth and Foot Painting Artists shares about 4th Annual Spinal Cord Symposium taking place this weekend.

Christopher Reeve's dream of finding a cure for paralysis is alive and well! This weekend will be an exciting weekend for me.

Earlier this year I was approached by Dr. Douglas Landsman, who invited me to the 4th Annual Spinal Cord Symposium, in Arizona (Dec. 10-12). As he explained it to me, there will be a unique and fascinating group of people attending. Scientists, doctors, and researchers will get together with people from the community who are living with spinal cord injuries. We're talking about some of the brightest minds, in the whole world, getting together to share their progress and ideas with one another. Many of these doctors/scientists have been working for many years in hopes of finding a way to improve the lives of those of us who live with paralysis and have never interacted with us. This weekend will give them more insight as to who they are working to help. What is even more exciting to me is that I have been asked to start a painting at the Symposium which depicts the spirit of the event. I will be taking my camera and snapping many photos of key features, people, and moments during the three day Symposium. Some of these photos will be incorporated into a poster which will be presented at next year's Symposium.

Any time I am invited by the Christopher & Dana Reeve Foundation to participate in one of its events, I feel honored and privileged to be able to contribute in some way. The Reeve Foundation has made me feel like family and nothing would give me more pleasure than to see Christopher Reeve's dream come true one day!

Ruben Rios

NOTE: Ruben Rios, a Reeve Foundation Ambassador, explains how he first started mouthpainting and  became a Scholarshipholder with the Association of Mouth and Foot Painting Artists.

I was first introduced to the Association of Mouth and Foot Painting Artists (AMFPA)  back in 1992. One day, I was bored so I asked my mom to set up a makeshift easel on my bedside table. Using a ball point pen, and regular printing paper, I began to doodle simple drawings just as I had done throughout my childhood. Upon my next visit to the hospital, I shared these doodles with the occupational therapist. She asked if she could post copies of my doodles in the corridor display case outside of her office.

A few days later, I received a phone call. It was Robert Thome, Robert is a very talented and well known artist who is a Life Member of the AMFPA. He had seen the doodles, and thought they were very good. He told me all about the AMFPA which was founded over 50 years ago by Arnulf Steigman, the AMFPA boasts over 500 mouth and foot artists worldwide, today. In order to be accepted as a scholarship/student member, one must paint using only his/her mouth or feet, and submit a small body of work along with a letter stating his/her intention of becoming a professional artist. At first, I was skeptical as to the quality of work that could be produced by mouth. I didn't want people to JUST admire the work because it was painted with my mouth. I wanted my work to stand on its own merits. The last thing I wanted was to be patronized with gratuitous compliments.

Robert took me to some exhibits where I saw amazing works of art which had been created by other mouth artists. Thanks to Robert's guidance, and mentoring, I applied and was accepted in 1996. The AMFPA reproduces our work on greeting cards, calendars, and more and uses the proceeds from sales, to help mouth and foot artists become better artists through the scholarships it awards. There are three levels of membership, Scholarship, Associate and Life membership. The latter two levels provide financial independence for artists. The Christmas mailing of these greeting cards is the most popular. On the back of each greeting card, one can find information about the artist such as name, country of origin and whether the image was produced by foot or mouth. What a special way to mail your best wishes to loved ones. Not just a greeting card, but hopefully an inspirational keepsake that was painted uniquely by a person who is living with a physical limitation.

The AMFPA truly gave my life a purpose at a time when I had extremely limited career options. I am grateful to Robert Thome, the AMFPA, my mom and all of the people who have come before me, for showing me the way and helping me to get there. Likewise, I would like to thank every single person who has supported the AMFPA by getting on the mailing list to purchase these fine greeting cards throughout the years.

Ruben Rios

Hi,

Just wanted to share how getting involve in wheelchair sports after I suffer a Spinal Cord Injury has helped me move forward. I have been paralyze for 17 years now. I'm a T-12 complete paraplegic. When I first got hurt did not know how i was going to move forward with my life. I was 20 years old at that time. I did my Rehabilitation at Rancho Los Amigos National Rehabilitation Center in Downey, CA. I owe a lot to this facility because they open so many doors of opportunities for me and I have a better quality of life now. I got involved with their wheelchair sports program one year after my discharge. I was blown away when I came out to play wheelchair hockey. I was playing with people who had been injured longer then me and some who just gotten out of the hospital. I learned how to play wheelchair hockey, but also my wheelchairs skills just sky rocketed. I stop being afraid of falling out my chair because I had the confidence to get myself back up without any one assisting me. after this introduction to wheelchair sports I became involved in tennis, snow skiing, and my favoritt basketball. Through sports I have had the opportunity to meet people from all walks fo life and all sort of disabilities just living life to it's full potential. I could have chosen to give up a long time ago , but my will and desire to live life did not let me. One of the lesson I have learned on this journey is that my disability has not stop me from living life to its full potential. Try to find people who will lift you up when your down and become active in some sort of activities; sports, painting, volunteering to keep you moving forward. Thanks for allowing me to share.

The Know-Barriers Outreach (KBO) is a component to Know-Barriers Life Coaching Program in Rancho Los Amigos National Rehabilitation Center (Rancho) located in Downey, California. KBO came into fruition thanks to the Christopher and Dana Reeve Foundation that funded the outreach through their Quality of Life grants. The Know-Barriers Outreach facilitates violence prevention and teen pregnancy prevention workshops. Through participation in educational workshops, students learn how to problem solve and identify causes for teen pregnancy, gang violence, drug abuse, and family and dating violence. The Know Barriers violence prevention outreach staff grew up in the inner city and has first-hand experience with drugs, violence, and teen pregnancy. Many of them are victims of violence who are living their lives in wheelchairs. This is not only a testimony to their courage but a constant reminder of the negative impact of gun violence. Their experience adds a critical understanding of the challenges our youth face and enables them to become a powerful tool for change. Originally the funding for the outreach was awarded to Sharp Hospital in San Diego to do these educational workshops to the most At-Risk kids in the inner cities of Los Angeles. Sam Maddox was a tremendous help in identifying the individuals that would deliver these series of workshops to the kids that need it the most. He had heard of Eric Gibson a violence prevention specialist who is involved in community development. Sam contact Eric and ask him if he would be interest in collaborating in this project. Eric knew that this was something that he could not pass on and started the process of identifying another person that he could rely on to assist him deliver this workshops. Eric had heard of Juan Garibay who is employ by Los Amigos Research and Education Institute Inc. (LAREI) of Rancho Los Amigos National Rehabilitation Center (Rancho) who had been doing violence prevention in the Compton and East Los Angeles area for some time now. Eric set up a meeting to brief Juan on the opportunity that was at hand. They both agree that this was something that needed to be done in order to prevent young kids from becoming a Spinal Cord Injury (SCI) or find themselves in prison, or worst end up dead. They agree the Compton was a good place to start. Compton has been known to be home to some of most notorious gangs in Los Angeles and in the nation, also its six miles west of Rancho Los Amigos and a lot of the victims that suffer from gun violence and become Spinal Cord Injured end up Rancho for Rehabilitation. When we started the workshops we were “Think First” of Sharp Hospital giving that the funding was being manage by their non-profit organization. Not long after we started to talk to Sharp about the possibility of transferring the funds to the Los Amigos Research and Education Institute. (LAREI) this is where the birth of the Know-Barriers Outreach started. Juan met with Greg Thompson the Director of the Social Work Department for Rancho and the Executive Director of Know-Barriers Life Coaching Program about the possibility of bring the outreach program from San Diego Sharp Hospital and make it a part of the Know-Barriers program. Greg liked the opportunity since he has always had a passion for helping kids. With Greg leadership we were able to acquire Gilbert Salinas a well known violence prevention specialist in Los Angeles. With Gilbert, Juan, and Eric the program has really been successful in expanding into three middle schools and one high school. Thanks to the Christopher and Dana Reeve Foundation, California Wellness Foundation, and Compton School District for their support. Without their support the work could not be done.

One of my favorite parts of working at the Reeve Foundation is meeting with quality of life grant recipients and learning about how the grants  have allowed their programs to grow and reach out to the community.

This weekend, in Albuquerque, New Mexico, the Keshet Dance Company will be having their annual performance of “Nutcracker on the Rocks” at the National Hispanic Cultural Center. The Keshet Dance Company has been a 5 time Reeve Foundation Quality of Life Grant recipient and the foundation’s funding in particular has funded the snow scene in this rock and roll version of the classic Nutcracker Ballet.

The Keshet Dance Company is an inclusive dance company located in Albuquerque, New Mexico and has also performed at the Southwest Conference on Disability, a few years back. The Company has also received numerous awards across the country including the “Coming Up Taller” award from First Lady Michelle Obama. This production of the Nutcracker incorporates performers of all abilities and ages and has become a New Mexico holiday tradition for many. 

I am looking forward to attending “Nutcracker on the Rocks" and meeting with Shira Greenberg, the choreographer, and the performers after this weekend’s performance.  Below is a picture from the "snow scene" which the quality of life grant went towards funding last year.

To purchase tickets to attend Nutcracker on the Rocks www.keshetdance.org

-Priti