© 2019 Cauda Equina Foundation

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Cauda Equina Foundation, Inc. serves to improve the quality of life and care for individuals living with Cauda Equina Syndrome.

Cauda Equina Syndrome News 

*New*

Indications for MRI in the Emergency Setting to Rule Out Cauda Equina Syndrome

 

 

 

 

Cauda Equina Syndrome Support​

Isolation is a word we hear time and time again with regards to Cauda Equina Syndrome. Those around individuals with Cauda Equina Syndrome confuse the chronic illness with "just having a bad back."  When you’re going through a flare-up you can spend days at a time in bed, unable to leave your house and when you do, people don’t understand how sick you are because “you don’t look like you’re sick.” Cauda Equina Syndrome can be an invisible illness, people can't see how affected those living with the illness really are on the inside. Even on a good day, it can be hard to function as a contributing member of society, let alone the household.
 
Cauda Equina Warrior Support and Discussion Community, a new online community launched by Cauda Equina Foundation, provides individuals with Cauda Equina Syndrome and their loved ones with the opportunity to engage with others like them to share experiences, find emotional support and discuss practical insights for coping with the daily challenges of the disease.
 
Cauda Equina Warrior Support and Discussion Community will serve as a 24/7 online resource allowing members to post questions, tips, engage with others and build relationships. Members are encouraged to share their stories and learn from the experiences of other people impacted by this life-altering chronic illness. 
 
Join today and start connecting! 
CES.Inspire.com

 

Research Fundraiser 
 
Cauda Equina Syndrome is severely under-researched, Cauda Equina Foundation conducts and supports research efforts that will lead to eradicating the neurological devastation caused by cauda equina syndrome, improve quality care, and improve the quality of life of individuals living with cauda equina syndrome.
 
 
 
2019 NORD Summit
 
 
 

 

 

 

 

 

Advocacy in Action

 
Cauda Equina Foundation PRESENTED TO THE FDA!
 
On January 30th, Cauda Equina Foundation presented to the FDA's Opioid Policy Steering Committee on the Safe Prescribing and Handling of Opioid prescriptions. Our motto in regards to the Opioid Epidemic is, "We can't treat one epidemic by creating another; suicide from untreated or undertreated pain." Watch our presentation by clicking here (we start around the 8-minute mark).
 
On July 9th, Cauda Equina Foundation represented its members at the FDA's Patient-Focused Drug Development for Chronic Pain Hearing in Washington, DC. Chronic Intractable Pain is common in Cauda Equina Syndrome patients and in the current politicized atmosphere of pain management, it is harder and harder to receive individualized and appropriate treatment to improve functionality and quality of life. We were there to advocate for Cauda Equina Syndrome pain patient rights to a higher quality of care in pain management. To view the session and watch our advocate speak on Cauda Equina Syndrome click below:
 
Session 1 
Session 2
 
 
Cauda Equina Foundation Attended the NIH Rare Disease Day Conference!

 

On March 1, Cauda Equina Foundation attended the National Institue of Health's Rare Disease Day Conference to advocate for the research of Cauda Equina Syndrome. 

 

 

 
 
 

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Need more ways to support Cauda Equina Foundation?

Support the Organization by Shopping!
 
Now with every purchase made through Amazon Smile, Cauda Equina Foundation will receive 0.5% of the proceeds. It doesn't cost you more, and you get to feel good about giving while shopping. 
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CES Swag!

Introducing Cauda Equina Syndrome SWAG! to promote advocacy and awareness. We teach healthcare providers to evaluate ALL back pain patients as Cauda Equina Syndrome until proven otherwise. This Cauda Equina Syndrome swag not only raises awareness but buying our swag raises money for the foundation to achieve its mission to improve the quality of life and care for individuals living with cauda equina syndrome. Visit our store today!

 

 

Cauda Equina Syndrom
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Set up a Facebook Birthday Fundraiser

Setting up a fundraiser on Facebook is a fast and easy way to help Cauda Equina Foundation raise money for Cauda Equina Syndrome Research, Education, Advocacy, and Patient Support.

 

Our research initiatives include:

 

1. Natural History of Disease

2. Sociological & Economical Impact

3. Epidemiology

4. Standards of Care

5. Pathophysiology

6. Patient Outcome Measures

We are also working to expand our Patient Support Program, build our Patient & Caregiver Leadership Board, and continue educating the community and raising awareness of CES. Every dollar counts. Cauda Equina Foundation is a 100% volunteer organization. Help us achieve our mission and goals by setting up a fundraiser today! Click the balloon to learn more.

Our 2020 Focus 

 

 1. Research

  1. Natural History of Disease

  2. Sociological & Economical Impact

  3. Epidemiology

  4. Standards of Care

  5. Pathophysiology

  6. Patient Outcome Measures

  7. Patient Registry

  

2. Patient Support Program Expansion

  1. Build Patient & Caregiver Leadership Board

  2. Expand Paintability Program

  3. Build Face to Face Support

  4. Develop Help Line

3. Education

  1. Provide Community Education

  2. Provide Patient Education

  3. Provide Healthcare Provider Education

 

4. Advocacy

  1. CES is a Chronic Illness Campaign

  2. Chronic Pain Management Patient Rights

  3. Accessibility and Anti-discrimination of individuals with disabilities

  4. Access to Affordable Healthcare, Alternative Therapies, and Adaptive Equipment

5. Partnerships

  1. NORD- National Organization of Rare Disorders

  2. Inspire

  3. ACMCRN- Arachnoiditis & Chronic Meningitis Collaborative Research Network