Many throughout our community have heard about the upcoming meeting “SCI 2020: Launching a Decade for Disruption in Spinal Cord Injury Research” being hosted by the National Institutes of Health (NIH) February 12-13, 2019. The Executive Council of NASCIC has been invited to speak in one session of this meeting.
At this meeting, we are trying to represent the SCI community to the research field as people living with SCI (and family/caregivers), as well as our respective organizations. To inform our session we sought input through a survey and we will relay the summary responses of the 1800 people who informed us of their opinions through that survey. Another venue is to support the open letter endParalysis has posted to the NIH conference organizers. Our overarching common goal is that we all want the results of research to truly improve our lives now.
We encourage people to reach out to the contacts at NIH/NINDS who are listed at this link: https://meetings.ninds.nih.gov/Home/Contact/21041 to share your opinions.
We also encourage people to attend the live streaming and archived video of the meeting that will be available at: https://videocast.nih.gov/
NASCIC will be creating a summary report of the meeting, the survey results, and suggestions of next steps for the future. We welcome feedback from our members. Look for this in March.
NASCIC’s newsletter ‘Speak Up’ (Issue 3) is now available. Click the link to catch up on all the news!
‘Speak Up’ – Vol. 1, No. 3
Check out NASCIC’s newsletter ‘Speak Up’ Issue 2! Click the link to catch up on all the news!
‘Speak Up’ – Vol. 1, No. 2
We have some great news! The NASCIC Executive Council have been asked by the National Institutes of Health (NIH) to provide input from our spinal cord injured community to help chart the future of funding for spinal cord injury (SCI) research in the next decade.
We ask that if you have an SCI or are a family member or caregiver of someone with an SCI that you take the time to fill out our survey – https://www.surveymonkey.com/r/SCI2020
This is a great opportunity for all of us to have a voice!
Nerve Stimulation for Neurogenic Bladder and Bowel Dysfunction Survey
Who we are: We are a group of individuals from clinical, research, industry, and SCI advocacy organizations who have designed a survey that we believe is of high importance to the SCI community.
We need your help: We are conducting a survey and the purpose is to provide individuals with spinal cord injury (SCI) with a voice to help the research community understand your needs and priorities for managing your bladder and bowel functions.
Why this survey matters: Your feedback will be used to directly affect research and development priorities for improving bladder and bowel care for people living with SCI.
As a person living with SCI, your input is critical to finding real solutions to bladder and bowel management issues that you face on a daily basis. We want to understand your needs and priorities for improving your bladder and bowel functions, and understand your opinions about using nerve stimulation technologies to achieve these goals.
This survey will take approximately 20 minutes to complete. Please follow the link below to complete the survey and enter for a chance to win a $50 Amazon gift card!
Click here to take the survey!
This year’s meeting will take place on Sunday October 21, 2018 following the Working 2 Walk Symposium in Vancouver, BC.
When: October 21, 2018
Where: Sheraton Vancouver Airport Hotel,
7551 Westminster Hwy, Richmond, BC V6X 1A3
The first edition of NASCIC’s newsletter ‘Speak Up’ is now available. Click the link to catch up on all the news!
‘Speak Up’ – Vol. 1, No. 1
Find out more about becoming a member by visiting the Membership page