100 things we have learned from 100,000 families served - Reeve Foundation

Many families have described the weeks and months following paralysis as being trapped in a dark room, trying to find a switch to turn on the light. That light represents hope -- a way forward after life has been changed in an instant. Christopher Reeve compared hope to a lighthouse and, to many, the Reeve Foundation has proudly served as that lighthouse since 1982.

Despite being one of the most iconic and celebrated movie stars of his time, Christopher Reeve and his family also found themselves in total darkness following his spinal cord injury in 1995. Dana Reeve compared that time to trying to land on another planet without a map.

There was no phone number to call for guidance or help. There were no experts reaching out to discuss Christopher’s long-term well-being, or offer caregiver resources and support. And, there was certainly no promise that an individual living with a spinal cord injury could lead a full and active life as a father and husband. But, instead of accepting that life with paralysis would be full of limitations, Christopher and Dana dreamed of a brighter future.

In 2002, that dream turned into a reality when the Reeve Foundation opened the Paralysis Resource Center (PRC) to offer a constellation of free resources and vital services. The PRC is the only program of its kind that directly serves individuals living with spinal cord injury, MS, ALS, stroke, spina bifida, cerebral palsy and other forms of paralysis. The breadth and depth of the PRC staff’s knowledge spans multiple languages, and they offer guidance on everything from what to expect in rehab, to transitioning back to home, and how to navigate insurance and healthcare systems.

Last month, we celebrated a tremendous milestone for the Reeve Foundation and the community we serve: 100,000 individuals and families impacted by paralysis have received direct counseling and personalized support from PRC staff members through our Information Specialists and Peer & Family Support Program.

During the 17 years that we have offered this critical lifeline to the paralysis community, our passion has grown exponentially and our dedication to the mission remains steadfast. Our staff works late at night, over the weekends, and on any holiday in which a community member is in need. They volunteer to run or roll marathons, conference 20xs per year, and fight for disability rights and inclusion within their respective communities. They are the Reeve Foundation’s frontline -- guided by Dana Reeve’s words to find the joy inside the hardship because that’s what this work demands. And, we are grateful for every minute they have worked for and with the Reeve Foundation, and for each of the 100,000 calls, emails, or in-person meetings to help families go forward.

100,000 is a big number. It reflects a tremendous investment in time and service. What does 100,000 translate to when evaluating the impact of the PRC? What have we learned?

1. There is a spike in calls and emails to our Information Specialists over holidays like spring break, Thanksgiving, and Christmas, as well as during the summer months.
2. 25% of inquiries are from caregivers looking to support their family member living with paralysis.
3. There are five full-time Information Specialists and three full-time staff members managing the Peer & Family Support Program.
4. Our Director of Information Services and Resources -- Bernadette -- has provided direct counsel to more than 6,500 individuals but that number doesn’t include the support she provides to her colleagues and their many cases. She started as an Information Specialist in 2002.
5. Over 12,000 individuals were matched and received one-on-one support from 384 peer mentors.
6. Information Specialists saw the highest number of requests in September 2002 due to Christopher Reeve’s 50th birthday and his appearance on Larry King.
7. The second busiest month was October 2004 when Christopher passed and the third was April 2016 when the Reeve Foundation’s website -- ChristopherReeve.org -- was re-launched.
8. The top questions raised by community members include returning home; funding assistance for home modifications or vehicles; advice on specific medical issues like UTIs, constipation and spasticity; how to help a loved one navigate new challenges; and, how to get into clinical trials.
9. Over 6,000 healthcare professionals have reached out to ask questions and access PRC resources such as the Paralysis Resource Guide.
10. Men are twice as likely to request support which reflects the higher prevalence of paralysis and spinal cord injury that exists among men.
11. Outside of English, the language most selected was Spanish, though Information Specialists are able to respond in 170 languages.
12. Hindi, Vietnamese and Tagalog were the other top selected languages.
13. Cervical injuries, especially C4-C6, were the most prevalent among individuals living with spinal cord injury which means they have limited or no upper limb mobility.
14. Spinal cord injury represents 43% of the total inquiries made to the PRC, but the other top causes of paralysis include: Stroke, cerebral palsy, TBI and MS.
15. Over 5,750 individuals sustained a spinal cord injury as a result of a motor vehicle incident.
16. The others main causes of SCI include: Fall (2,709), sports/recreation activity (2,636), and victim of violence (1,325).
17. Over 24,000 individuals shared they were living with quadriplegia vs. 20,000 living with paraplegia -- the rest did not specify or listed their level as unknown.
18. The main age groups to request PRC support are (1) 20-29 (2) 50-59 (3) 30-39.
19. 15% of inquiries were from individuals living with paralysis for less than a year.
20. The top ten countries to receive PRC support include (1) US (2) India (3) Canada (4) Mexico (5) UK (6) Vietnam (7) Colombia (8) Argentina (9) South Africa (10) Australia
21. The US represents over 60% of PRC inquiries with California as the top state.
22. The other top states based on the number of requests include (2) Florida (3) New York (4) Texas (5) New Jersey (6) Pennsylvania (7) Illinois (8) North Carolina (9) Ohio (10) Virginia.
23. In 2002, the first year of the PRC, the Information Specialist team had 5,272 inquiries and, over the years, that number has nearly doubled with 9,897 recorded in 2018.
24. Over 50,000 Reeve fact sheets were sent to community members and nearly 26,000 life-saving wallet cards were distributed, as well.
25. The PRC offers a Military and Veterans Program (MVP) to address the unique needs of service men and women regardless of when they served or how they were injured.
26. Between June 2015-June 2018, over 1,300 veterans or military personnel were served by PRC programs.
27. Most requests from veterans focus on navigating military benefits and the VA healthcare system.
28. Over 200,000 copies of the Paralysis Resource Guide have been distributed globally and it’s a staple in rehab facilities and hospital settings.
29. Information Specialists were able to reach out to over 45,000 individuals within two days of receiving their inquiry.
30. In 2013, the Reeve Foundation Paralysis Resource Center transitioned from the Centers for Disease Control and Prevention (CDC) to its current cooperative agreement with the Administration for Community Living (ACL).
31. ACL’s mission is to maximize the independence, well-being, and health of older adults, people with disabilities across the lifespan, and their families and caregivers.
32. Thanks to the funding and support received from ACL, all programs and services provided by the PRC are free to the paralysis community.
33. Over two million individuals visit ChristopherReeve.org annually to access a vast inventory of information on life with paralysis.
34. There are certified peer mentors in 42 states as well as in the DC area.
35. Based on their tenure with the Reeve Foundation, the Information Specialists have a combined 50 years of experience.
36. The Quality of Life Grants Program has provided over $24.5 million in financial support to fund over 3,000 non-profit projects in all 50 states, including programs that provide adaptive sports and camps, caregiver reprieve, as well as accessible transportation and job skills training.
37. Over 70% of users access ChristopherReeve.org from their smartphone or tablet device.
38. Most visited web pages for 2018 were (1) How the spinal cord works (2) Sexual health for men (3) Resources in your area (4) Autonomic Dysreflexia.
39. The Living with Paralysis section of the website accounts for 30% of traffic and offers over 300+ articles on how to navigate life, find resources, and understand the causes and complications of paralysis.
40. Reeve Connect, the Foundation’s new online community, had over 400 people sign up in the first three weeks of the re-launch.
41. There are close to 7,000 users on Reeve Connect with 15 moderators, including: Elena Pauly and Brooke Page of WAGs of SCI, Zack Collie, Cruise Bogle, Garrison Redd, Joe Preti, Joe Arcidiancono, Brooke Underwood and Ally Grizzard.
42. Since Reeve Connect was launched in February 2019, there have been 195 discussion and close to 900 comments. The most popular topics include holistic approaches to pain and WAGs of SCI stories.
43. Bill Cawley, Director of the Peer & Family Support Program, has worked at the Reeve Foundation for 10-years and launched the peer program in 2011.
44. Over the past year, the Reeve Foundation’s Instagram following increased by 60% thanks to the stories shared by community members.
45. The Reeve Foundation has 62K followers on Facebook with over 15 million impressions and 200K engagements in 2018; many of those engagements were opportunities to introduce users to PRC services
46. People find PRC services mostly through digital channels like Google and Facebook, however, word-of-mouth is also an important path to programs like Information Specialists.
47. Maggie Goldberg is the Reeve Foundation’s Chief Operations Officer and serves as the director of the PRC; she started with the Foundation in 2000 and worked directly with Christopher and Dana Reeve to raise the Foundation’s profile.
48. The average tenure for PRC staff members is 8.6 years.
49. Each year, the PRC attends 20 conferences around the world to connect with community members and develop partnerships with like-minded organizations.
50. The PRG is available in 11 languages which includes Arabic, Chinese, French, Hindi, Japanese, Korean, Portuguese, Russian, Spanish, Tagalog and Vietnamese.
51. There have been over 7,0000 referrals from Information Specialists to the Peer & Family Support Program to foster deep-rooted relationships across the community.
52. 145,000+ materials, including fact sheets and new injury packets, have been sent to individuals and healthcare partners.
53. The PRC hosted a summit at the White House to highlight the challenges that parents with disabilities face and created a “Know Your Rights” toolkit with the National Council on Disability to outline parental rights and resources.
54. Wallet cards such as those for Autonomic Dysreflexia and Sepsis are now available in 16 languages.
55. Wallet cards were downloaded 3,000 times in 2018 alone.
56. Reeve Foundation health videos have received over 2.6 million views on YouTube and includes a library of 598 videos.
57. Over 3.7 million minutes of Reeve video content has been consumed on YouTube.
58. In 2018, there were close to 10,000 downloads of the Paralysis Resource Guide and over 6,500 downloads of various fact sheets.
59. Spinal cord injuries alone cost roughly $40.5 billion annually -- a 317% increase from costs estimated in 1998 ($9.7 billion).
60. The PRC has produced over 150 fact sheets covering A-Z topics from the ABLE Act to women with disabilities.
61. Christopher Reeve’s wheelchair is featured in the lobby of the Reeve HQ in Short Hills, NJ, so it’s the first thing people see when they arrive at the Foundation. Many community members have a moment of silence or touch the armrest to honor Christopher.
62. The Peer & Family Support Program has partnered with 22 facilities to extend the reach of the program and assist more families impacted by paralysis.
63. Over 25,000 copies of the Spanish PRG have been distributed.
64. In the final 2018 cycle, the Quality of Life Grants Program awarded nearly $1.6 million in financial assistance to organizations that support underserved communities and serve target populations like military, rural, tribal, LGBTQ, and others.
65. 25 Quality of Life grants totaling $415,367 were awarded to organizations and projects that support low income and/or poverty populations in the final 2018 cycle.
66. The first edition of the Paralysis Resource Guide was issued in 2003 (we are now on edition 4).
67. Over 2,000 of copies of Dewey Doo-it, a children’s book about disability, have been distributed to families.
68. Three of the original PRC staff members --Sheila, Donna, and Bernadette--are still with the program for 17-years and counting! And, we have recently welcomed Maria, our newest PRC employee, who has been with us for less than a month.
69. Many community members, especially caregivers, reach out to Information Specialists when planning their family vacations to make sure their loved one can fully participate.
70. Travel tips and packing lists are one of the most popular topics on Reeve Foundation social media channels with many users eager to share their stories and experiences.
71. Over 100 PRC fact sheets have been translated in Spanish.
72. Information Specialists comb through Facebook and other social media channels to answer questions from community members and direct them to other Reeve resources.
73. In 2018, the PRC offered adaptive yoga classes with 79 classes and 873 yoga sessions completed through a yoga fellowship at the Hospital for Special Care in New Britain, CT.
74. Donna Lowich, an Information Specialist, was featured in a Reeve Foundation campaign called Adaptoys that discussed the importance of adaptive toys and inclusive solutions for parents with disabilities. Donna was featured alongside her granddaughter, Karaleen.
75. The PRC has twice produced a paralysis prevalence report in 2009 and 2013 which uncovered that 1 in 50 Americans are living with paralysis--nearly 40 percent higher than previous estimates showed.
76. The PRC has a fact sheet with local and regional resources for every state, including DC and Puerto Rico.
77. The PRC also has fact sheets for 50 countries (many in the native language) to help residents and visitors access in-country services and programs.
78. Facebook and Instagram posts featuring Christopher and Dana Reeve garner the most interactions.
79. Hashtags most used by Reeve followers on social media include #JoinReeve, #ForDana and #ReeveConnect
80. In 2018, the Reeve Foundation garnered over 6.5 million impressions and 100,000 engagements like comments and shares.
81. As one of the top five pages on ChristopherReeve.org, the Resources in your area map was introduced in April 2016 and offers a zip code lookup of paralysis-related organizations.
82. Resources in your area has been viewed over 162,000 times (2% of total website views!) and has over 2,800 organizations listed, including those who have received funding through the Quality of Life Grants Program.
83. The Information Specialist team has produced a number of educational resources focused on prevention, including a summer safety checklist given the high volume of injuries that occur during the summer months.
84. Bill Cawley is featured in the homepage image of ChristopherReeve.org with his daughter and has inadvertently become the official model of the Reeve Foundation.
85. In 2017, the Peer & Family Support Program added peer mentor profiles to empower community members to select a mentor that most aligned with their background and interests.
86. Don’t Call it a Miracle: The Movement to Cure Spinal Cord Injury by Kate Willette was created in 2015; 3,800 copies have been distributed with an additional 2,000 downloaded through Amazon and iTunes.
87. The Life After Paralysis blog is the most viewed and visited blog channel on the Reeve Foundation site with 30,000 views in 2018 alone.
88. Over a third of total web page views are from foreign language pages with new content in the pipeline to be translated.
89. Between June 2015-June 2018, Reeve public policy staff participated in or led 13 coalitions related to disability which includes 220 coalition meetings.
90. 80% of individuals surveyed agreed the PRC’s services and resources helped them better assist their loved one living with paralysis.
91. 79% indicated the PRC’s services and resources strengthened their understanding of paralysis.
92. The PRC partnered with AMVETS to create a four-part video series to help Veterans and members of the military living with paralysis navigate their benefits and resources.
93. Nurse Linda Schultz is one of the most requested experts through the PRC and hosts a monthly webinar to address pressing healthcare issues, as well as answers questions in real time on Reeve Connect.
94. In the late 90s, Nurse Linda worked with Christopher Reeve on a research program in St. Louis and, separately, with his nurses at his home in New York. “What I learned from Christopher Reeve was how to really advocate for people,” she said. “It was the experience of a lifetime.”
95. In 2018, the PRC hosted 28 webinars on topics ranging from polypharmacy to transitioning from rehab to home.
96. The Reeve Foundation has over 78,000 subscribers to its email list who receive weekly information on PRC programs, new materials, and groundbreaking news (sign up here!).
97. Information Specialists have two Spanish-speaking staff members at the ready to translate and provide direct counsel to community members.
98. PRC staff members provided critical guidance on how to make the city of Asbury Park more accessible, starting with the beach and local businesses.
99. The Information Specialists team are also available on Reeve Connect, the Foundation’s new online forum, to answer questions and provide resources.
100. Information Specialists are available weekdays from 9am-8pm ET. Please visit, https://www.christopherreeve.org/ask to schedule a call or send through a question.