ANNUAL REPORT 2014 On the cover: The pioneers of epidural stimulation: (left to right) Kent Stephenson, Rob Summers, Dustin Shillcox, Andrew Meas. Truly a life-changing breakthrough, epidural stimulation exemplifies the Christopher & Dana Reeve Foundation’s mission to advance care and discover cures for spinal cord injury through innovative research and quality of life efforts. Learn more at ReeveBigIdea.org TABLE OF CONTENTS 1 Message from the Chairman of the Board and the President & CEO 2 Research 4 Paralysis Resource Center 6 Quality of Life Grants 7 Advocacy 8 Team Reeve® 10 Team Reeve Spotlights 11 Supporter Spotlights 12 Team LeGrand 14 A Magical Evening 16 Special Events 19 Supporter Spotlights 20 Donor List 23 Financials MESSAGE from the Chairman of the Board and the President & CEO It all started with a seed of hope . planted decades ago by a group of visionary pioneers. Fueled by groundbreaking research, steadfast advocacy, generous contributions and lots of hard work, the hope grew. Nurtured by the unwavering dedication of countless scientists, volunteers, community members and so many more, the hope flourished. Now we’ve come to the moment we’ve been waiting for . real hope is here. Everyone and everything that’s contributed to the Christopher & Dana Reeve Foundation comes together in The Big Idea (see page 2). Without a doubt, epidural stimulation has the potential to change the course of recovery and the quality of life for millions living with a spinal cord injury. The long-awaited, transformative breakthrough is here. As you can imagine, it’s difficult to contain our excitement over the incredible impact of epidural stimulation research on the paralysis community. But just like any groundbreaking innovation, our progress must move forward with a clearly defined path. In 2014, that path came into focus with new research featuring Rob, Kent, Andrew and Dustin, the four men who saw huge improvements in their ability to control autonomic functions and move their toes, feet and legs on command as a result of epidural stimulation. Through The Big Idea, we will advance this breakthrough by expanding epidural stimulation research to include 36 more individuals in the coming years. The opportunity to make a tangible difference is here! Christopher Reeve once said, “Once you choose hope, anything is possible.” It never ceases to amaze us what this incredible community can do. Whether you join the Reeve Foundation by making a donation, or taking a giant leap and flying through the sky like Brandon Stone (see page 10), the important thing is that we keep moving forward together. Through this annual report, we invite you to learn more—and join us—as we continue to transform hope into life-changing opportunities for the 5.6 million Americans living with paralysis. Every movement has its moment. This is ours. John (Jack) Hughes Peter T. Wilderotter Chairman, Board of Directors President & CEO 2014 A NNUAL R EPORT 1 RESEARCH Every Movement Has Its Moment. This Is Ours. 2014 was a watershed year for the Reeve Foundation, most notably with the unveiling of epidural stimulation research and the launch of The Big Idea to further investigate this breakthrough. Simply put, we believe epidural stimulation has the potential to ease some of the life-threatening health complications of a spinal cord injury and transform lives in the here-and-now. The next phase of research will expand on the earlier study that demonstrated how epidural stimulation seems to have reawakened the spinal circuits of four young men with chronic, complete paralysis. As detailed in the medical journal Brain, all four men recovered the ability to stand and control voluntary movement in their legs, hips, ankles and toes in the presence of epidural stimulation. They also regained significant bladder, bowel and sexual function, as well as improvements in overall health, including regulation of blood pressure and temperature. And the most exciting part? This is only the beginning . The Big Idea will test the application of epidural stimulation in a larger, more diverse group of 36 individuals living with chronic, complete spinal cord injury. Research and medical experts have teamed up with principal investigator Dr. Susan Harkema to explore and measure the effect of epidural stimulation in several key areas: • Cardiovascular • Bowel, Bladder & Sexual Function • Pulmonary • Voluntary Movement • Quality of Life • Economic Outcomes The last area of the study, economic outcomes, will document the im- pact epidural stimulation has on medical expenses and frequency of hospitalization. This analysis is crucial for the study, and for insurance companies who may be asked to pay for the intervention. Learn more and #JoinReeve to change lives at ReeveBigIdea.org The ultimate goal of The Big Idea is to translate epidural stimulation from a scientific breakthrough into a safe and effective treatment for those who were told there was no hope for recovery after sustaining a spinal cord injury. There is always hope and we have living proof. 2 C HRIS TOPHER & DANA REEVE FOUNDATION “For the first time in a very long time, INTERNATIONAL RESEARCH CONSORTIUM we had hope.” ON SPINAL CORD INJURY A letter from Sophorn Meas, the wife of In September 2014, the Consortium held a day-long epidural stimulation participant, Drew Meas. intensive workshop in Zurich with European thought leaders in medical research and translation. Workshop On September 6, 2006, my husband was hit programs focused on ‘inclusive protocols’ in human head-on by a reckless driver. In an instant, spinal cord injury trials, imaging tools to assess damage our lives changed as Drew was diagnosed with a spinal cord injury (SCI) at C6-C7. and functionality of the injured spinal cord and brain, bladder control and ongoing and planned clinical studies. There is a ripple effect when someone you love sustains a SCI—everyone feels the impact and everyone has to navigate a new way forward. Together, as a family, we figured out a new rhythm. NORTH AMERICAN CLINICAL TRIALS ® When Drew was selected to participate in a NETWORK (NACTN) groundbreaking study featuring epidural A $2.5 million application submitted to the Department of Defense Joint War- 80 NRN stimulation, I didn’t want to get my hopes up. fighter Medical Research Program was recommended for funding in late 2014. PARTICIPANTS But the day that I saw Drew’s legs respond to Distributed during the years 2016–2017, the funding will ensure NACTN’s ARE NOW epidural stimulation was the best moment in continued participation in RISCIS (Riluzole in Spinal Cord Injury Study) Phase WALKING my life. All of a sudden, I saw a future full of 2/3 clinical trial. The study will enroll 351 participants and evaluate the efficacy adventures for the Meas family. and safety of the drug riluzole in treatment of participants with an acute As Drew continues to shatter expectations, spinal cord injury. he has become a superhero to our son— a real-life Superman. All I can say is thank you for giving us new hope NEURORECOVERY NETWORK® (NRN) for the future. In 2014, the NRN welcomed Journey Forward in Canton, MA, to its network of community fitness and wellness facilities. The primary intervention used at NRN sites is Locomotor Training, an activi- ty-based therapy that activates the neuromuscular system below the level of the lesion. In the past year, the use of NeuroMuscular Electrical Stimula- tion (NMES) was introduced to the NRN as a second activity-based intervention through targeting upper extremity function. To learn more, visit ChristopherReeve.org/research 2014 A NNUAL R EPORT 3 PARALYSIS RESOURCE CENTER (PRC) PEER & FAMILY SUPPORT PROGRAM INFORMATION SERVICES TEAM To expand accessibility and outreach, the Peer & Family Support Program continues Each day, a team of highly trained Information to leverage technology to create virtual peer mentor training, social media connec- Specialists responds to critical inquiries with help tions and other opportunities to make it easier for both peers and mentors to join and information for paralysis-related questions. the program and find a good match. In the three years since the program’s launch, In 2014, we launched the Ask-A-Nurse Pro- many have shared their thoughts about its impact. gram. Every week, Linda M. Schultz PhD, CRRN, “Having a peer mentor has meant a lot to me as I have felt alone in a community appears live in the online community to address of people without disabilities. No one understands what I am going through bet- subjects related to paralysis and integrating ter than a peer mentor. I am excited about my future. I would like to take a peer various healthcare improvements into daily mentor training so I can share my struggles as well as my successes.” life. Each Monday, Schultz posts about topics “Sue is a life line for me while I adjust to life in a wheelchair. We have never met ranging from bladder management to skin care, in person, but that hasn’t stopped us from sharing our lives. She is playing a and community members can submit questions huge role in my ability to establish a satisfying life.” before or during the live online chat. The highly Linda M. Schultz PhD, CCRN “Your words of support and encouragement were so reassuring, and the sugges- successful program has reached as many as tion to have a caregiver mentor for me was like a ray of sunshine. Thank you. I 2,200 people per discussion theme. feel like I can face another day, and the day after that.” “Thanks to the Reeve Foundation Peer & Family Support Program, I feel that me The Reeve Foundation also established a new partnership with Boys Town®, a and my family will not stand alone in this new journey of rebuilding my life as national organization that offers support and care for at-risk children and families well as that of my family.” as well as a national, 24/7 hotline staffed by specially trained counselors.