Where we've been
December 12, 2014: Officially declaring the desire to found a nonprofit organization for cauda equina syndrome
Foundation Facebook page goes live
June 2015: Cauda Equina Syndrome Community Group on Facebook
March 2016: Founder's First Official Board of Directors Meeting
May 2016: Articles of Incorporation
October 2016: Medical Advisory Board Founded
Founding members: Dr. Denise Taylor, Do, Dr. Jason Hwang, MD, Dr. Rochelle Sansotta, DPT, Amanda Proctor, BS-RRT
December 2016: First Annual Meeting and State of the Union Address
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August 2017: Chronic Pain Challenge Issued as Advocacy Campaign for the CDC Opioid Prescribing Guidlines
Harm on CES patients with Chronic Pain
October 2017: First Lecture on CES Red Flags to University of Central Florida Department of Health
December 2017: Recruited a Chief Marketing Officer
January 30, 2018: FDA Opioid Policy Steering Committee Hearing Live Response
February 2018: Response to the FDA Public Docket Regulations.gov:
"To the Opioid Policy Steering Committee: Response to Prescribing Intervention Exploring a Strategy for Implementation"
February 2018: National Institute of Health's Rare Disease Day, Washington D.C.
March 2018: Partnered with National Health Service at the Walton Centre Foundation Department of Neuroscience to help fund CES research
Cauda Equina Syndrome Core Outcome Set (CESCOS): An international patient and healthcare professional consensus for
research studies
April 2018: Started a dedicated research fundraiser to support the CESCOS study
May 2018: Started selling swag to support the foundation
July 2018: FDA Public Meeting Patient Focused Drug Development for Chronic Pain
-We attended as Cauda Equina Syndrome Advocates
August 2018- Partnered with Inspire
September 2018: Awarded Google Ad Grant
September 2018: Recruited Director of Operations
October 2018: Raised over $2,000.00 for the CESCOS study
November 2018: Participated in the CESCOS Consensus meeting at the Walton Centre Neuroscience Department in Liverpool, UK
November 2018: First membership meeting in Liverpool, UK, followed by Dublin, Ireland
January 2019: Official members of The National Organization of Rare Disorders (NORD)
February 2019: National Institute of Health Rare Disease Day
CES Member Meeting Washington, DC
The Many Faces of CES Advocacy Campaign
April 2019: World Orphan Drug Congress- Scholarship recipients
CES Member Meeting Dinner, Washington, DC
May 2019: Paintability Fundraiser
October 2019: NORD Summit- Scholarship recipients
CES Member Dinner Meeting, Washington, DC
November 2019: Recruited Mallory Reeves, Chief Financial Officer
January 2020: Restructuring of Medical Advisory Board
February 2020: FDA Rare Disease Day
NIH Rare Disease Day
NORD Member Leadership Dinner
CES Member Dinner Meeting Washington, DC
CES PhotoVoice Project
March 2020: COVID All in person events were canceled. Cauda Equina Syndrome patients are in the high risk category for Severe COVID-19
Complete replanning for the 2020 fiscal year
April 2020: Recruited Dr. Daniel Krichbaum, Pharm D to Medical Advisory, Scientific, & Review Board
May 2020: Recruited Dr. James Wymer, MD to medical Advisory, Scientific, & Review Board
August 2020: First meeting of new Medical Advisory, Scientific, & Review Board
Dr. James Wymer, MD Named Chief Medical Officer
September 2020: Partnered with Sanford Research for a CoRDS Patient Registry
October 2020: Recruited Chuck Nitsch, PT, CAAEE to Medical Advisory, Scientific, & Review Board
First Virtual CES Member Meeting
November 2020: Recruited Dr. Heather Rader, PT, DPT, PRPC, BCB-PMD to Medical Advisory, Scientific, & Review Board
First Virtual "Ask the Expert" CES Member Meeting with Dr. James Wymer, MD- Neurology
Medical Advisory, Scientific, & Review Board Meeting
December 2020: Virtual CES Member Meeting
January 2021: Virtual Member Meetings move to bi-monthly
February 2021: Virtual "Ask the Expert" CES Member Meeting Dr. Heather Rader, PT, DPT, PRPC, BCB-PMD- Pelvic Floor Physical Therapy
Harm on CES patients with Chronic Pain
October 2017: First Lecture on CES Red Flags to University of Central Florida Department of Health
December 2017: Recruited a Chief Marketing Officer
January 30, 2018: FDA Opioid Policy Steering Committee Hearing Live Response
February 2018: Response to the FDA Public Docket Regulations.gov:
"To the Opioid Policy Steering Committee: Response to Prescribing Intervention Exploring a Strategy for Implementation"
February 2018: National Institute of Health's Rare Disease Day, Washington D.C.
March 2018: Partnered with National Health Service at the Walton Centre Foundation Department of Neuroscience to help fund CES research
Cauda Equina Syndrome Core Outcome Set (CESCOS): An international patient and healthcare professional consensus for
research studies
April 2018: Started a dedicated research fundraiser to support the CESCOS study
May 2018: Started selling swag to support the foundation
July 2018: FDA Public Meeting Patient Focused Drug Development for Chronic Pain
-We attended as Cauda Equina Syndrome Advocates
August 2018- Partnered with Inspire
September 2018: Awarded Google Ad Grant
September 2018: Recruited Director of Operations
October 2018: Raised over $2,000.00 for the CESCOS study
November 2018: Participated in the CESCOS Consensus meeting at the Walton Centre Neuroscience Department in Liverpool, UK
November 2018: First membership meeting in Liverpool, UK, followed by Dublin, Ireland
January 2019: Official members of The National Organization of Rare Disorders (NORD)
February 2019: National Institute of Health Rare Disease Day
CES Member Meeting Washington, DC
The Many Faces of CES Advocacy Campaign
April 2019: World Orphan Drug Congress- Scholarship recipients
CES Member Meeting Dinner, Washington, DC
May 2019: Paintability Fundraiser
October 2019: NORD Summit- Scholarship recipients
CES Member Dinner Meeting, Washington, DC
November 2019: Recruited Mallory Reeves, Chief Financial Officer
January 2020: Restructuring of Medical Advisory Board
February 2020: FDA Rare Disease Day
NIH Rare Disease Day
NORD Member Leadership Dinner
CES Member Dinner Meeting Washington, DC
CES PhotoVoice Project
March 2020: COVID All in person events were canceled. Cauda Equina Syndrome patients are in the high risk category for Severe COVID-19
Complete replanning for the 2020 fiscal year
April 2020: Recruited Dr. Daniel Krichbaum, Pharm D to Medical Advisory, Scientific, & Review Board
May 2020: Recruited Dr. James Wymer, MD to medical Advisory, Scientific, & Review Board
August 2020: First meeting of new Medical Advisory, Scientific, & Review Board
Dr. James Wymer, MD Named Chief Medical Officer
September 2020: Partnered with Sanford Research for a CoRDS Patient Registry
October 2020: Recruited Chuck Nitsch, PT, CAAEE to Medical Advisory, Scientific, & Review Board
First Virtual CES Member Meeting
November 2020: Recruited Dr. Heather Rader, PT, DPT, PRPC, BCB-PMD to Medical Advisory, Scientific, & Review Board
First Virtual "Ask the Expert" CES Member Meeting with Dr. James Wymer, MD- Neurology
Medical Advisory, Scientific, & Review Board Meeting
December 2020: Virtual CES Member Meeting
January 2021: Virtual Member Meetings move to bi-monthly
February 2021: Virtual "Ask the Expert" CES Member Meeting Dr. Heather Rader, PT, DPT, PRPC, BCB-PMD- Pelvic Floor Physical Therapy
