2010 has been filled with advancements and achievements! First off, I have officially started a 501c3 non-profit organization called Rise Up To Cure Paralysis! Check out the new website! RUTCP was born from all the amazing support I encountered from the wonderfully generous people in my life. Since early 2009 I’ve been searching for my niche in the Spinal Cord Injury (SCI) community, where I could apply my knowledge and experience to be most effective in helping find a cure for paralysis. The success of several grassroots fundraisers inspired me to foster new relationships, rekindle old relationships, and build a book of business in order to raise money on a large scale. The ultimate goal of these fundraising efforts is to support innovative SCI research and assist individuals living with paralysis through Quality of Life Grants. THANK YOU so much for the continued support, none of this would be possible without your amazing generosity!
Before I get on with the blog update and while you’re in the holiday spirit, remember a donation to RUTCP in the name of a friend or loved one is a great holiday gift (and it’s a tax deduction)! Our new website has an easy donation link, so check it out! If you would prefer to mail a check, that’s great too! Our address is 1 Harborside Place Suite #735, Jersey City, NJ 07311. Also, we are always in need of volunteers, so if you are inclined to lend your expertise to a phenomenal cause, contact us!
The positive outcome of the original fundraising events is the motivation for what I’m doing now. If I can do it for myself, what’s stopping me from increasing involvement on a large scale and providing life changing assistance to many more people living with paralysis? Nothing. OK, well maybe some long days on the phone, meetings to garner interest from corporations and individuals interested in charitable giving, pages upon pages of paperwork for the IRS, consultations with attorneys and accountants, etc…. you get the idea. It’s a lot of work, but all very worthwhile once a life changing gift is given to a research institution or individual!
What else have I been up to other than starting a non-profit organization? Well, since February I’ve been participating in a clinical trial at The Kessler Foundation. 3 or 4 days a week I am standing over a treadmill for a 65 minute workout using a body weight support system. I have electrodes attached to my legs. Once a minute for 11 seconds, electricity shoots through my muscles causing them to contract and for a brief time I am able to stand under my own power (albeit quite wobbly). While standing, my therapy team takes me through many adaptive exercises to strengthen my body, promote muscle movement, and improve balance. I’ve had some remarkable advancements since starting this therapy. I’ve regained use of use of my left tricep, increased the grip strength (flexion) in my right hand, awakened and strengthened many muscles in my core (upper abdominal, mid/lower back, obliques), improved blood pressure, and increased bone density significantly. Unfortunately, as proven as this therapy is, it is not available to people with spinal cord injuries classified as Asia A. Hence the clinical trial to prove its efficacy. And it is currently only available in less than 10 locations throughout the US to people with spinal cord injuries classified as Asia C or Asia D. This is why it is so very important to raise money for research institutions, so they may continue to develop innovative therapies and make them available to rehabilitation facilities as soon as possible. These cutting edge therapies need to be readily available to all whom wish to participate. Nobody should be denied the opportunity to recover due to insurance coverage, geographic location, or financial status. The bottom line is new therapies and advances in medicine are not possible without appropriate funding for research. That’s why I’m asking you to get on board and help out
Throughout 2010 I’ve been forging new relationships, while ramping up the launch of RUTCP. I’ve been fortunate enough to have discussions and build friendships with some of the brightest minds and ambitious contributors in the SCI community.
This spring I was invited to meet the team at the Christopher & Dana Reeve Foundation and learn about their organization. Their impact on the SCI community is truly amazing. They are involved with worldwide advocacy, research, assistance to individuals, information dissemination, and the list goes on. Amongst the many events they organize is an annual star studded gala in NYC, which Rosaleen and I attended, and a research symposium hosting some of the most distinguished minds of collaborative neuroscience. They are absolute pillars of the SCI community.
I may be a bit biased but the team at the Kessler Foundation are phenomenal as well. I’ve learned so much about my injury and the possibilities of recovery from the vast amount of knowledge that these wonderful people possess. Since February 2010, I’ve been surrounded by a top notch team of researchers, doctors, therapists, and engineers whose chosen profession is to find a cure for paralysis and improve the daily lives of people living with SCI. I consider myself extremely fortunate to be their test subject (lab rat .
Later in the spring I toured the W.M. Keck Institute at Rutgers University. This is the home of Dr. Wise Young’s SCI Lab. Dr. Young is a bit of a legend and has been at the forefront of SCI neuroscience for 25+ years. He is currently spearheading stem cell clinical trials in China and his research has directly contributed to many innovative SCI treatments used today. During our visit to the Keck Institute, we bought some raffle tickets and won the grand prize! A dinner discussion/speaking engagement with Dr. Wise Young! Just another sign that RUTCP is destined for success!
This summer I was introduced to Jesse Billhauer and the Life Rolls On Foundation. Their flagship program is an event called TWSA (They Will Surf Again), in which I participated at Rockaway Beach, NYC. I was left speechless and with a perma-grin after catching wave after wave on a beautiful sunny Saturday morning at my old surf break. What an amazing sense of accomplishment this program provides!
So that’s my update! Thank you to all who have provided continued support and have helped make RUTCP a reality! Best to you all during this Holiday Season and remember a donation to RUTCP in the name of a friend or loved one is a great holiday gift (and tax deductible)! Again, our new website has an easy donation link, so check it out! If you would prefer to mail a check, that’s great too! Our address is 1 Harborside Place Suite #735, Jersey City, NJ 07311. Also, we are always in need of volunteers, so if you are inclined to lend your expertise to a phenomenal cause, contact us! Please continue to spread the word about us as awareness is of the utmost importance!
Wishing everybody the best in 2011!!!!