Highlights from the 1st Spinal Cord Injury Investor Symposium: The 3-Pillar Research Strategy of the Christopher & Dane Reeve Foundation

Spinal cord injury (SCI) affects an estimated 17,500 individuals each year in the United States, and less than 1% of those with SCI will experience complete neurologic recovery upon hospital discharge. Rehabilitation, assistive devices, medications, and surgery only provide benefit in mitigating symptoms, improving mobility, stabilizing the spine, and reducing pain.

In June, the first ever Annual SCI Investor Symposium was held in San Diego, California, as a multidisciplinary conference where leaders from the industry, academia and community advocacy organizations, as well as people with SCI, came together to discuss their work, experiences, and the future of SCI treatment. The Practical Neurology team sat down with an executive from the Christopher & Dana Reeve Foundation to discuss the current landscape of SCI treatment, research, and their work in this field.

Marco Baptista, PhD, is the Chief Scientific Officer at the Christopher & Dana Reeve Foundation, an organization that funds research in SCI and provides resources to educate and assist people living with paralysis in their recovery, with the goal of accelerating regulatory processes for treatments.

Dr. Baptista explained the foundation’s 3-pillar research strategy: 1) catalyze, 2) energize, and 3) educate.

1. Catalyze provides a boost to early, high risk–high reward research initiatives to support innovative preclinical and proof of concept clinical trials and engage investor support. For example, the Christopher & Dana Reeve Foundation is exploring potential research initiatives to investigate the use of epidural stimulation as treatment for bladder dysfunction in SCI.

2. Energize initiatives are intended to foster collaboration within the SCI community. The SCI Investor Symposium is an example of an energize initiative, where industry and academia can meet and share their work.

3. Educate pertains to the sharing of research data between institutions as well as the standardization of research tools. Under the education pillar, the Christopher & Dana Reeve Foundation has provided the University of Alberta with a grant to hire a data retrieval specialist who will format SCI research data for ease of access by other institutions and researchers on the Open Data Commons website.

It is hoped that the foundation’s research strategy will help people with SCI with their major challenges, including bladder dysfunction, bowel dysfunction, pain, as well as blood pressure dysregulation. While there is currently no cure for SCI, the Christopher & Dana Reeve Foundation works to accelerate research into novel treatments with the goal of improving quality of life through its 3-pillar approach. The Christopher & Dana Reeve Foundation states that they have provided $140 million into SCI-related research initiatives over the past 40 years, which has contributed to advancement in brain-computer interfaces and gene therapies for axon regrowth.

“We talk about a cure, or cures, but what we’re really talking about are transformative treatments that will improve the quality of life in individuals,” said Dr. Baptista. “I’m excited we’re having conversations to address the needs of individuals living with SCI, and the Reeve Foundation is in an optimal position to facilitate these treatments.”

Key points for clinical neurologists:

• It is essential to listen to and collaborate with people with SCI as care partners.
• People with SCI have a wealth of information about living every day with an SCI---they are a vital part in clinical trials for new treatments and therapies.