Our Mission:

Find a cure.

We are patients, physicians and scientists working together to find a cure for humanity's most painful disease.

Complex Regional Pain Syndrome (CRPS) is a major cause of disability in America according to AETNA healthcare and yet most physicians have never heard of the disease.  Approximately ten million Americans are living with CRPS according to calculations based on NIH experimental studies, which show 12-14% of all surgeries result in CRPS. 

CRPS is a progressively painful and disabling condition which often results in suicide due to lack of palliative care or FDA care protocols. We want to change this troubling trend and provide concrete hope to patients.

Patients are currently paying for medicines vast ignorance of pain-producing disease. CRPS can be managed if diagnosed in the earliest stages however many sources of power are decentivized to diagnose CRPS. Surgeons who may damage autonomic nerves fear legal liability of having causing CRPS and insurance companies including Medicare, Medicaid and the VA want to mitigate the expensive lifelong palliative treatments, which come along with a CRPS diagnosis.

No cure exists for CRPS.  There are no FDA-approved treatments for CRPS. There is a lack of double blind placebo-controlled scientific study of CRPS treatments.  The diagnostic criteria is lacking in scientific merit.

 Most people living with CRPS are misdiagnosed with infection, pseudo gout, somatoform illness, depression, conversion disorder or malingering.

CRPS patients face the hard reality of systemic ignorance of pain disease within medicine and institutionalized discrimination against people complaining of pain common in care facilities. In America there is an alarming lack of training on the pathophysiology of pain and the autonomic system.  Medical school students and medical professionals alike have little to no training in the human pain system or what happens to the body when the pain system becomes damaged or diseased. We aim to change this by creating and financing core curricula authored by experts in the pathophysiology  of CRPS.

Our mission to find a cure for CRPS requires raising awareness of the disease both within the medical industries and with the general public. People living with CRPS cannot get cured without first being diagnosed.  Having the diagnosis will not help if the Federal Government health agencies and consumer protection agencies have approved no care protocols. We aim to change this by bringing clinical data to lawmakers and policymakers.

Our organization will leverage advancements and knowledge across many disciplines. Scientific advancement often moves in unique silos where effort must be made to cross-pollinate ideas. CRPS is known by 72 distinct names according to the discipline, language and region in which it is studied. 

To find a cure we need to understand what initiates and drives CRPS, how to better diagnose it, and what common traits or factors must be present to nurture the disease and leverage the clinical data of care providers. Physicians who have practiced medicine for many years tracking patient progress and response to various treatments need to be analyzed and shared.

We have a big job to do because as surgery becomes more and more prevalent so to does CRPS.  We have a great deal of work to do educating physicians, scientists, educators, hospitals, insurance industry executives and the general public to CRPS so that CRPS becomes a manageable condition with a cure.

 

 
 
 
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Dr. Ronny Hertz MD, DDS

Dr. Hertz has been a leader in the field of pain medicine for over 25 years. Since October 1991, Dr. Hertz has been a leading pain medicine physician at St. Luke’s-Roosevelt Hospital Center and also holds a faculty appointment at Columbia University College of Physicians and Surgeons.

Dr. Hertz founded and developed the pain medicine division and fellowship program at St. Luke’s-Roosevelt Hospital Center and has built the program into one of the premier programs in the country. Dr. Hertz practices in all aspects of pain medicine. He specializes in chronic pain diseases such as Complex Regional Pain Syndrome (RSD), Fibromyalgia, Facial Pain, and Neuropathic Pain. He is skilled in performing spinal injections and treats various spinal problems including but not limited to spinal disc herniation, disk pathology, spinal stenosis, myofascial pain, and facet arthropathy.

Prior to St. Luke’s, Dr. Hertz practiced for 10 years at Lenox Hill Hospital as an attending anesthesiologist and pain management physician. Dr. Hertz graduated Medical School from the State University of New York in Syracuse. He also holds a dental degree from Northwestern University School of Dentistry in Chicago. He completed his residency training at The State University of New York in Syracuse and The Albert Einstein College of Medicine in New York City. Dr. Hertz’s residency was in Anesthesia and he sub-specialized in Pain Management.

Dr. Hertz is nationally renowned physician in the field of pain medicine. He has taught at conferences in the United States and abroad.

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Dr Steven DiGiovanni

Dr. Stephen DiGiovanni, M.D. has been practicing pain medicine in New York City since 1983. He graduated from Wagner College and was awarded his medical degree from the University of Bologna, Italy. His training in anesthesiology was completed at the Cornell Medical Center and New York Hospital in 1982. He continued on and completed a fellowship in regional anesthesia and pain management at the Cornell Medical Center and New York hospital where he roated through memorial Sloan Kettering Hospital and Cancer Center in NYC and the Virginia Mason Clinic and the University of Washington pain clinic in Seattle Washington. He became an attending anesthesiologist at Lenox Hill Hospital in 1983 where he was subsequently appointed chief of division of pain medicine and in 1995 he was appointed the associate direction of the department of anesthesiology.

Dr. DiGiovanni is board certified by the American Board of Anesthiology and received his certificate of added qualifications in pain management in 1994. He is a diplomate of the American Academy of Pain Management, a member of the American Pain Society, the American Society of Interventional Pain Society, the American Society of Regional Anesthesia and Pain Medicine.

Other professional associations and memberships include: The American Society of Anesthesiologists, The New York State Society of Anesthesiologists, The New York County Medical Society, The Society for Ambulatory Anesthesia.

Barbara Gradus, Nurse Practitioner

Barbara Gradus is

 

 

 
 
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Our Mission

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Learn More

 

Our Partners

 
 

CRPS PatientS

Patient perspective  drives the research at Cure CRPS Foundation. We connect directly with CRPS patients from around the world to produce best practices from a patient perspective. This allows research to be guided and benchmarked by actual treatment success as viewed by the patient.

Unfortunately Most scientific research today is governed, funded and directed by pharmaceutical companies who profit from managing longterm incurable disease or by insurance companies who seek the cheapest treatments which may mean sacrificing quality.   We are connected directly with patient populations to allow patient goals guide success.  Focus groups, patient software, polling and direct interaction with patient populations will direct the deliverables at the foundation.

All research projects will be peer-reviewed by physician advisors and patient populations to gauge success of various directives. Patients perspective is often missing from treatment regiments as massive industrial powers create the care protocols based on profits and expenses. To reduce side effects and promote ability and wellness, patient perspective remains paramount to gauging success.

Medical Labs

We are reaching out to labs around the world who have been working on developing assays to test for genetic markers which may be unique to CRPS patients

 

Interdisciplinary Medical Centers

We are going to work to leverage advancements in integrative medicine with CRPS patients to host clinical trials and leverage case study and analysis to see how nutrition, exercize and mind body awareness techniques and cognitive therapies may benefit CRPS patients.

 

Patient Advocacy groups

Cure CRPS foundation will be partnering with select patient advocacy groups to help raise awareness of CRPS and advocate for better care and treatment of CRPS patients within the patient advocacy network. By leveraging the work and position of other patient advocacy groups we can help one another reach objectives in care and equal rights.

 

Health Care PRoviders

We are reaching out to physicians around the world who have worked directly with CRPS patients long-term to help them publish anecdotal studies and longitudinal study of their unique patient populations. Our work integrating this knowledgebase is key to patient-centered perspective.
 

Medical Schools

We will be providing medical schools peer-reviewed curricula to help begin training on the pathophysiology of pain early  in the career of the medical school student. We will make recommendations on study of  the autonomic system and pain systems drawing from multiple fields to enhance knowledgebase of neurologic illness. Currently there are no required studies on the pathophysiology of pain which is why most patients with pain are discriminated against in medical settings. We aim to change that.

 

Hospital organizations

We will be hosting seminars with hospital management to educate medical care professionals on best practices, diagnosis and care protocols for CRPS patients. This effort will result in immediate and swift change to the current low standard of care of pain patients.

 

Medical Associations & Boards

We will be providing curricula for CRPS diagnosis and treatment to help advance the knowledgebase of CRPS within the various specialty associations. Once board-certified pain practitioners, psychiatrists, psychologists, physiatrists, osteopaths, neurologists, surgeons, internists, primary care physicians, family doctors and nurse practitioners receive education and training on the diagnosis of CRPS, there will be a swift reduction in cases of medical misconduct and malpractice of CRPS patients.  We aim to end discrimination of the CRPS patient due to lack of education by the board certified healthcare professional.  

 

 

Our Programs

We are dedicated to addressing major deficiencies in health care for the CRPS patient, making available clinical data from around the world and across many disciplines to develop science-based care protocols. CRPS patients are underserved and discriminated against due to ignorance within the medical community. We are deconstructing the unique challenges the CRPS patient faces and building a new archetype for care.

Before Mary Lasker and scientist Dana Farber joined forces, energy and vision to raise both public and professional awareness of Cancer, people struggling with cancer were discriminated against and essentially left for dead by the medical establishment. They changed the narrative, they infused governmental and private labs with energy, funds and vision to find a cure. They convinced the President and congress and pharmaseutical companies and hospitals and to devote precious resources to fighting cancer. They convinced the National Institutes for Health (NIH) to build a seperate facility to focus soly on cancer. Cancer now receives more money, more respect and people who are diagnosed now have hope that a diagnosis is no longer a death sentance. Cancer patients are given priority treatment and seen with compassion. Cancer patients are seen as mountain climbers on invisible mountains.

It's time CRPS patients are seen the same way, struggling to survive an extraordinary challenge. We need funding. We need research. We need awareness. We need the public knowing what it is, how to prevent it and how to cure it.

I am Heather Wolf, founder and executive director of the Cure CRPS Foundation, Inc. I have CRPS and my Doctors Ronny Hertz and Doctor Loren Fischmen are brillient compassionate doctors who have dedicated their lives to helping CRPS patients thrive despite the prognosis. They are now dedicated to finding a cure.

Let's do what Dana farber and Mary Lasker did. Let's take this life experience and make it our life's work! They turned cancer into something my husband survived and I am going to lovingly take her charge and apply it to CRPS. Read about

 

 

Engineering

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Technology

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Science

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Mathematics

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Our Programs

 
 

REsearch

We selectively fund research projects which are voted on by patient advisory  and physician advisors taskforces. Research projects aim to find any underlying genetic factors which may drive CRPS as well as other factors necessary to form CRPS after autonomic nerve injury.

Patients and physicians together will set benchmarks for success. No insurance industry or pharmaceutical company funds will be accepted. All research is driven by patient and physician.

Availability

Mon - Frid

Location

D & H Pain Management

New York, NY

 

Education

We provide curricula for middle school, high school  and advanced level education and learning on CRPS to pre-med students, medical schools and post graduate studies in specialized medicine.

We are comprehensively driving development in education from the ground up to change how neurological disease is seen.

By building sound educational curricula grounded in the scope of scientific knowledge, we aim to end discrimination against disease which science has not yet solved. These educational protocols should bring an end to forced misdiagnosis of unknown neurological illness as somatoform, where patients are discriminated against as being psychologically unsound.

 

Availability

call for information

Location

1 Irving Place P22D

New York, NY 10003

 

Public Awareness Campaigns

Because CRPS signs and symptoms wax and wane and because pain can not be objectively seen by health care providers, CRPS patients are often discriminated against in office settings or denied medical care in care facilities.

Cure CRPS Foundation is launching several campaigns to raise awareness of CRPS both withing the medical field and to the public. CRPS is one of many "invisible neurological diseases". The symptoms of CRPS can be totally disabling despite sometimes lacking in physical outward signs and therefore many patients are routinely denied health services or benefits due to disabled.

We are sponsoring awareness campains to educate the public.  People suffering invisible disabilities deserve respect and compassion. People dealing with CRPS are climbing invisible mountains.

CURE CRPS Foundation, Inc. sponsored the #climbinginvisiblemountains campagn.

 

Availability

Monday – Saturday
Morning, Afternoon or Evening

Location

1 Irving Place P22D

New York NY 10003

 

Diagnostic Tools

We are sponsoring development and research into developing tools and tests to help diagnose CRPS and track patient health over time.

Before MRI, MS was seen as somatoform because lesions on the brain could not be visualized. Diagnostic medicine changed that. We hope to shine a light on the pathophysiology of CRPS to help stop misdiagnosis of CRPS as somatofrom by uneducated professionals.

Tools which track patient physiology over time are critical to application of the Budapest Protocol. Without these tools, the Protocol must be updated to reflect inadequecies of the 10 Minute Neurologic clinical exam where autonomic dysfunction cannotn be seen. Temporal analysis of patient physiology is critical to capturing actual disease state and progression.

Availability

Monday – Friday

Location

D & H Pain Management, NY, NY

 

Data Gathering INitiatives

We are building tools to analyze data streams incorporating advances in medicine across the world, along many disciplines through time. CRPS is known by 72 unique names around the world and by specialty. Our aim is to comb through the literature and conduct both literature reviews as well as questionnaires of clinicians working with CRPS patients around the world. By developing IT solutions which allow physicians to leverage each others work and build on advances within the silos of science we have a better chance at finding a cure for CRPS and helping to diagnose it sooner.

Availability

Morning, Afternoon and Evening

Location

online initiatives from around the world.

Our Impact

We are changing how CRPS patients are treated when they enter ER facilities. We are helping people suffering with CRPS get a valid diagnosis. We are empowering the CRPS patient with choices by advocating for them in Washington to get FDA approved treatment protocols. 

We are bringing together patients and physicians who have been treating CRPS patients to develop best practices rooted in actual case study.

We aim to help increase early diagnosis rates when the disease can be fully treated during stage 1 of the illness. We are unafraid to tackle tough questions: How do we incentivize surgeons to help diagnose CRPS during Stage 1 after nerve injury?

We are benchmarking success with the help of patient perspective who are governing guidelines of success. Most science is paid for by pharmaceutical and insurance company dollars. We are changing this model to bring funding direct from patient to physician.

 
 

 

All initiatives implemented by CURE CRPS Foundation, Inc. are tracked over time and reviewed by both patients and physician advisory committees.

 
 

 
 
 

Get Involved

My vision as president and founder of CURE CRPS FOUNDATION is to give people living with CRPS an opportunity to help in a concrete and meaningful way. Your life experience is extremely valuable and we need each other, you and I.

With adequate funding, we have career opportunities for people with CRPS.  We do not want to be disabled. As CRPS patients, we want and need to work.   The CURE CRPS FOUNDATION provides a unique opportunity to work from home at our own pace and in a meaningful way. We can turn this terrible illness into an opportunity to build a future for ourselves and for each other working to solve this health catastrophe.

For those who are unable to work due to disability, there are still many opportunities to help the Foundation to cure CRPS.  By sharing the work of this foundation with others, raising funds and volunteering at local events or for social media campaigns to raise awareness, we have many opportunities to help us grow and achieve our noble objective.

Love and light to all of you,

Know that you are not alone and that hope is there. With all our energy and focus we will find a cure!

Heather Wolf

Chair, CURE CRPS Foundation, Inc.

 

 

Sign Up For a Program

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Volunteer opportunities

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Make a Donation

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