​Connecting at the Summit

Posted by Howard Menaker in Life After Paralysis on October 25, 2022 # Reeve Summit

Howard and Patrick with Marco Baptista and Maggie GoldbergWhat an exciting, inspiring, and educational two days at the 2022 Reeve Foundation Summit! The Foundation billed the Summit as “Where Care, Cure and Community Connect,” and it lived up to that promise and more. In two days in Washington, DC, I connected with people who, like me, are living with spinal cord injury, heard from doctors and experts, visited vendors who provide our essential supplies, and learned about the connections we can all make to improve our quality of life. I can truly say that it was an uplifting experience, and one everyone should try to attend next year.

I want to pass along just a few of the highlights of the Summit, and in my next blog, I will write about the personal stories I heard and how they affected me.

Let’s start with the fact that we were able to gather together safely! Getting to meet and spend time in person with Reeve Foundation staff, from President and CEO Maggie Goldberg on down, was a pleasure. It was great to meet people I have been emailing with, or knew only from Zoom calls, including Marketing and Communications Coordinator Julia Leonard, and Director of Public Policy Kim Beer. And seeing my friend Bernadette Mauro, the first person I spoke to at Reeve 8 years ago, was just a delight. The dedicated Reeve staff worked hard to make this event a huge success, but they always found the time to stop and talk with the attendees.

The speakers were outstanding. From them, I learned, among many other things:

  • The Reeve Foundation is working on improving care, finding cures, and building community resources with many other organizations, including the Paralyzed Veterans of America, the ALS community, Parkinson’s organizations, and others. Together, we are more effective advocates, and we share knowledge that benefits us all.
  • There is a serious crisis in our country due to a shortage of caregivers. Not enough people are being trained to help those of us with paralysis, and too often, the role defaults to relatives and friends. We need to help them learn the best way to provide for our care, and we also need to be sure they take care of themselves while taking care of us.
  • There is exciting research going on in the field of paralysis, but all too often, these studies fail due to a lack of subjects. But we can all help. The North American Spinal Cord Injury Consortium (www.nasciconsortium.org) is a great place to learn about current research projects and to volunteer to participate in them.
  • The federal government is trying to help, but the wheels of government turn slowly. Their impact is years away. Flying is more dangerous, more degrading, more inconvenient, and even more life-threatening to people with disabilities than ever before. But the US Department of Transportation is working on new regulations that would provide safer travel, help protect our wheelchairs as we fly, and improve bathroom accessibility. The US Treasury Department is designing new paper currency that offers raised tactile features for those with limited sight.
  • We need to take care of ourselves. We must not simply find good medical care, but we must gather empathy and support around us, and find outlets for the range of human emotions we all encounter. Among other resources, the Reeve Foundation offers mentors and other forms of support for both individuals with spinal cord injuries and our families (as we navigate the challenges of our lives.

These are only a few highlights of the outstanding presentations at the Summit. The Reeve Foundation provides important information all year long, but watch for early notification of next year’s Summit, and make your plans to attend.

Howard Menaker is a retired communications and public affairs executive, with over 30 years of experience in international corporations and trade associations. Previously, he worked as an attorney, specializing in civil litigation. He now devotes much of his time serving on non-profit boards of directors, including a prominent theater company and a historic house museum in the Washington, DC area. He and his husband split their time between Washington and Rehoboth Beach, DE.

The National Paralysis Resource Center website is supported by the Administration for Community Living (ACL), U.S. Department of Health and Human Services (HHS) as part of a financial assistance award totaling $8,700,000 with 100 percent funding by ACL/HHS. The contents are those of the author(s) and do not necessarily represent the official views of, nor an endorsement, by ACL/HHS, or the U.S. Government.