Mission
"To improve the quality of life and care for individuals living with cauda equina syndrome and associated disorders."
Vision"To eradicate the devastating symptoms and neurological deficits caused by cauda equina syndrome and associated disorders."
Core ValuesIntegrity. Empathy. Compassion. Transparency.
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Cauda equina foundation, inc.
A History
Cauda Equina Foundation, Inc. (CEF) was officially incorporated May 10, 2016 as a 501c3 charitable nonprofit serving to improve the quality of life and care for individuals living with cauda equina syndrome (CES) and associated disorders. The foundation was founded by Amanda Proctor, who at age 29, was diagnosed with CES, a rare spinal nerve root disorder that causes severe and lasting disability for many, including her. It was this severe and lasting disability that drove her to go on form Cauda Equina Foundation, Inc.
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Amanda was a Registered Respiratory Therapist at the time of her CES injury in 2012, working in critical care and emergency medicine, and she loved her job. Unfortunately, CES had different plans for Amanda. After being physically unable to return to practicing as a Respiratory Therapist, she started looking for answers. Answers, she learned that were not out there. No one was seriously studying this rare disease. There were case reports here and there, and small studies that focused on surgical timing and diagnosis, but there was nothing out there about the phase of the disease that Amanda refers to as the "what now" phase, or in professional terms, the chronic disease stage of CES.
Some will tell you that there is no such thing as chronic CES (CH-CES), their argument is valid. There is no evidence of it in medical literature. But no evidence does not mean that this stage of the disease does not exist. What we do see in medical literature over and over again is that delay in treatment leads to catastrophic injury and decreased likelihood for patients to recover. But it is not labeled, CH-CES, and therefore to the scientific mind, there is no evidence that CH-CES exists. But by the very definition of chronic disease, there is absolutely such a thing as CH-CES. A disease or injury in which a patient does not recover in the expected amount of time or is symptoms last greater than three months. What about the patient's flair-ups and periods of regression, and seemingly relapsing episodes of acute CES (A-CES) with no radiographic evidence or known injury to cause such symptoms. All characteristics of a chronic disease; having acute on chronic episodes. This information is discussed further at length on another page. So, if it is not CH-CES when the patient does not recover, what then do we call it? And if we don't even know what to call it, how do we define it, and if we can't define it, how do we diagnose it? If we can't diagnose it, how on earth are we to treat it, never mind cure it.
And this was just the beginning the many questions that drove Amanda to found Cauda Equina Foundation.
Some will tell you that there is no such thing as chronic CES (CH-CES), their argument is valid. There is no evidence of it in medical literature. But no evidence does not mean that this stage of the disease does not exist. What we do see in medical literature over and over again is that delay in treatment leads to catastrophic injury and decreased likelihood for patients to recover. But it is not labeled, CH-CES, and therefore to the scientific mind, there is no evidence that CH-CES exists. But by the very definition of chronic disease, there is absolutely such a thing as CH-CES. A disease or injury in which a patient does not recover in the expected amount of time or is symptoms last greater than three months. What about the patient's flair-ups and periods of regression, and seemingly relapsing episodes of acute CES (A-CES) with no radiographic evidence or known injury to cause such symptoms. All characteristics of a chronic disease; having acute on chronic episodes. This information is discussed further at length on another page. So, if it is not CH-CES when the patient does not recover, what then do we call it? And if we don't even know what to call it, how do we define it, and if we can't define it, how do we diagnose it? If we can't diagnose it, how on earth are we to treat it, never mind cure it.
And this was just the beginning the many questions that drove Amanda to found Cauda Equina Foundation.
The Founders.
We started out like every other rare disease nonprofit out there. Fumbling in the dark. Knowing where we wanted to go, but not where the keys to the car were, let alone the maps to even begin following directions to get there. We did not have rich founding members, we did not have a slushy trust fund; we had tenacity and pure determination to make it happen. But things can't happen with just determination. We started talking to everyone we could find. One benefit was that being that Amanda had a background in healthcare, she had contacts in the healthcare industry that she could lean on for guidance.
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One of those individuals was her first neurologist, Dr. Denise Taylor, D.O. she was one of the first doctors willing to treat a CES patient with no prior experience in its treatment, but she went above and beyond that by making the disease her own passion. The foundation would not be where it is today without Dr. Taylor helping us get started. From writing patient education and literature reviews, to helping us make business decisions, we owe so much to the dedication of one doctor that was willing to say, "I don't know, but we are going to learn together." She changed not only Amanda's life, but she will forevermore change the lives of all of those that the foundation helps.
She wasn't the only one to step up out of their comfort zone. Dr. Rochelle Sansotta, DPT, a physical therapist that had not treated a CES patient before she took the challenge of helping us set our goals, find out who we were, and helped us determine what we wanted to do as an organization. She was vital in helping us realize that we can't educate healthcare providers if we do not first have the research to back it up. She is one of the reasons that one of our primary goals as an organization is CES research.
Mallory Robinson, MHA, with an exercise physiologist and kinesiologist was an expert of neuroplasticity and neurorecovery, Amanda was her first CES patient as well. Mallory's keen business sense helped us stay focused on our short term goals to be set up with a strong foundation in order to move towards our long-term goals. As an executive director herself, she was a mentor to Amanda in business practices and financial planning.
Doug Truex is a patient with CES for well over a decade and was able to be a patient mentor to Amanda, having only had CES for a few years by this time. Bringing a patient perspective to the founding members is vitally important and we wanted to ensure that we were serving both the newly diagnosed patient and those that have had the disease for, well, decades. He was also amazing with information technology and computers, which was awesome because not only did we start out with a virtual office, but to this day we operate through a virtual office.
One of the hardest things Doug and Amanda came to realize was the difficulty in being consistent in volunteer hours due to the symptoms of CES. If either of us also had to also get dressed and drive somewhere and then sit at a desk or in any chair to put in those hours, this foundation may not be where it is today. For those of you with CES, you know why we referenced the difficulty with sitting. For those of you here to learn about living with CES, that particular information is on another page; spoiler alert. It HURTS to sit! Doug was able to ensure that we had a place to securely store our information, and a platform that we could securely meet on while laying on the couch or in many cases in bed. We were "working" (volunteering) from home before it was cool (this was written during the COVID-19 pandemic).
She wasn't the only one to step up out of their comfort zone. Dr. Rochelle Sansotta, DPT, a physical therapist that had not treated a CES patient before she took the challenge of helping us set our goals, find out who we were, and helped us determine what we wanted to do as an organization. She was vital in helping us realize that we can't educate healthcare providers if we do not first have the research to back it up. She is one of the reasons that one of our primary goals as an organization is CES research.
Mallory Robinson, MHA, with an exercise physiologist and kinesiologist was an expert of neuroplasticity and neurorecovery, Amanda was her first CES patient as well. Mallory's keen business sense helped us stay focused on our short term goals to be set up with a strong foundation in order to move towards our long-term goals. As an executive director herself, she was a mentor to Amanda in business practices and financial planning.
Doug Truex is a patient with CES for well over a decade and was able to be a patient mentor to Amanda, having only had CES for a few years by this time. Bringing a patient perspective to the founding members is vitally important and we wanted to ensure that we were serving both the newly diagnosed patient and those that have had the disease for, well, decades. He was also amazing with information technology and computers, which was awesome because not only did we start out with a virtual office, but to this day we operate through a virtual office.
One of the hardest things Doug and Amanda came to realize was the difficulty in being consistent in volunteer hours due to the symptoms of CES. If either of us also had to also get dressed and drive somewhere and then sit at a desk or in any chair to put in those hours, this foundation may not be where it is today. For those of you with CES, you know why we referenced the difficulty with sitting. For those of you here to learn about living with CES, that particular information is on another page; spoiler alert. It HURTS to sit! Doug was able to ensure that we had a place to securely store our information, and a platform that we could securely meet on while laying on the couch or in many cases in bed. We were "working" (volunteering) from home before it was cool (this was written during the COVID-19 pandemic).
Where are we going from here?
2021 & Beyond
- Launch Patient Registry
- Increase Marketing to recruit more patients into the patient registry
- Recruit Additional Specialist for Medical Board
- Launch Patient Champion Consortium (Launch Patient & Caregiver Action Committee)
- Host Virtual Patient Meetups
- Host Q & A sessions with Experts and Patients
- Launch Podcast
- Expand YouTube Channel
- Expand Patient Mentorship Program
- Initiate IRB Accreditation
- Attend NORD Summits
- Attend NIH and FDA RDD
- Expand CES Store for earned income revenue sustainability
- Attend World Orphan Drug Congress
- Initiate infrastructure for genome project
- Initiate infrastructure for MRI review study
- Increase patient membership 15%
- Build CEF membership options
- Start Standards of Care Research
- Set up Memberships
- Secure an Endowment
- Set up Internships
- Expand Volunteer Program
- Recruit a Volunteer Manager
- Provide Research Grant
- Develop CES Specialty Provider List
- Develop Employment Training Program for individuals with CES that need to change careers
- 1st Annual International CES Symposium
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2022
2023
2024
2025
- Continue and Evaluate 2021 and
- Review & update research agenda
- 2nd Annual International CES Symposium
- Expand Research
- Get approved by IRB for Healthcare Accuracy
- Review Standards of Care Research
- Host expert meetings to review data from Patient Registry
- Staff a Statistician to review research data
- Review MRI research program
- Launch genome project
- Plan first clinical study
- Expand Memberships
- Secure 2 Endowments
- Host Education Seminars for Professionals
- Expand The CES Store
- Provide Research Grant
- Provide Educational Scholarship for the study of CES
- Launch Employment Training Program
- Expand Patient Support Program
2023
- Continue and Evaluate 2022 and
- Review and update research agenda
- 3rd Annual International CES Symposium
- Launch first clinical study
- Implement Standards of care recommendations for peer review and comment
- Develop spectrum of disease report for peer review
- Develop CES definition for consensus review
- Expand Patient Support Programs
- Expand Earned Income Revenue for Sustainability
- Secure 3 Endowments
- Hire limited Paid Staffing
- Develop framework for local chapters
- Hire a part-time nurse educator
- Hire a full time Development Director and Grant Writer
2024
- Continue and Evaluate 2023
- 4th Annual CES International Symposium
- Review and update research agenda
- Plan Launch of second clinical study
- Raise Scholarship Funding for MD’s and DO’s PHD study of CES
- Develop framework for a CES Center of Excellence
- Develop framework for CES accreditation
- Develop framework for specialty credentialing of the treatment of CES
- Secure 4 Endowments
- Expand Earned Income Revenue for Sustainability to include and expand employability training for those with CES that are able to work but need to change careers
- Raise scholarship funding for individuals with CES that are able to work but need to change careers
- Raise funding for emergency/crisis patient support
- Hire a social worker
- Raise funding to create a 24/7 CES crisis hotline and peer support line with paid and volunteer staff
2025
- Review and evaluate 2024
- Launch CES accreditation criteria and benefits with application process and market to potiential centers
- Develop review process for continued accreditation and achievement markers
- Review accreditation site applicants for CES centers of excellence
- Expand Patient Support Programs
- Expand Scholarship Program
- Expand funding for emergency/crisis patient support
- Build infrastructure for individual and group mental health counseling
- Build infrastructure for virtual physical, occupational, and nutritional counseling and therapy
- Build infrastructure for virtual physician visits with CES accredited specialty physicians and Centers in underserved areas
- 5th annual International CES Symposium