Skip to content

Support Groups

A man with short dark hair in a chambray shirt is seen from the back. A woman with blonde chin-length hair leans over and puts her hand on his shoulder.

Associations And Support Groups

You may find valuable information from organizations specializing in a specific disorder.

Many patients with chronic diseases find inspiration and information in support groups, which bring people with the same illness together in a group facilitated by a knowledgeable health professional.

Alzheimer's

Associations

  • The Alzheimer’s Association is the leading, global voluntary health organization in Alzheimer’s care and support, and the largest private, nonprofit funder of Alzheimer’s research.

Support Groups

Epilepsy

Associations

The Epilepsy Foundation leads the fight to stop seizures, find a cure and overcome the challenges created by epilepsy.

Support Groups

The Epilepsy Foundation offers support for parents, adults/teens, and children, as well as hosts online community forums.

The Epilepsy Foundation las local chapters in Orange County and San Diego.

Hydrocephalus

Associations

The Hydrocephalus Association provides support, education and advocacy for people whose lives have been touched by hydrocephalus and the professionals who work with them.

Support Groups

The Hydrocephalus Association has support via:

Multiple Sclerosis (MS)

Associations

The National Multiple Sclerosis Society has a website that discusses multiple topics, including prognosis, treatment and research of multiple sclerosis.

Support Groups

The National Multiple Sclerosis Society offers many types of support, including:

Neuropathy

Associations

  • The Foundation for Peripheral Neuropathy works to educate the public and healthcare professionals, provide state-of-the-art treatment for patients with peripheral neuropathy,
  • The Restless Leg Syndrome Foundation is a non-profit organization providing the latest information about Restless Leg Syndrome. The goals of the Foundation are to increase awareness, improve treatments, and through research, find a cure for RLS, a condition which severely affects the lives of millions of individuals.

Support Groups

The Foundation for Peripheral Neuropathy’s support group finder

Parkinson's Disease (PD)

Neurology and Pain Specialty Center Groups:

Parkinson’s disease and essential tremor support group: Parkinson’s in Balance, led by Allison Smith, provides education, support groups, fitness classes, psychotherapy, and community outreach programs at no cost.

In the region or online:

Associations

Support Groups

PSP/CBD

Associations

Foundation for PSP/CBD and Related Brain Diseases (CurePSP) assists patients and their families, increases public awareness, educates healthcare professionals and supports research toward better diagnosis, effective treatments, and eventual cures.

Support Groups

CurePSP offers in-person and online support groups.

Research

To help our patients find programs and treatments to address their medical conditions, our staff participates in research studies.

Dr. Martinez is a lead investigator in the following studies:

PRISM (The Pseudobulbar Affect Registry Series)

Pseudobulbar Affect (PBA) is a neurologic condition estimated to impact over a million patients and their families in the United States. PBA occurs secondary to an otherwise unrelated neurologic disease or injury, such as Alzheimer’s dementia or stroke. Symptoms of PBA include involuntary, frequent, and disruptive outbursts of crying and/or laughing. The goal of this study is to establish the prevalence and quality of life impact of PBA in patients with underlying neurologic conditions including:

  • Alzheimer’s disease
  • Amyotrophic lateral sclerosis
  • Multiple sclerosis
  • Parkinson’s disease
  • Stroke
  • Traumatic brain injury

Medtronic Implantable Systems Performance Registry (ISPR) 

ISPR is a database being created by Medtronic from patients who have received Medtronic implantable deep brain stimulators. The patients who obtain DBS have Parkinson’s disease, essential tremor, dystonia or Tourette syndrome. The purpose is to monitor the use and performance of Medtronic products, and to better understand what the patient needs. The data obtained will be used toward improving Medtronic’s products and developing new products and therapies in the future. They will also use the information to follow government regulations regarding product monitoring and safety. This study is ongoing and requires patient visits at least every six months.

Medtronic RECHARGE

This is sub-study to the ISPR, is a prospective, multi-center, open-label, non-randomized, interventional study that will assess the recharge system of the Activa RD System in subjects who are receiving DBS for Parkinson’s disease, essential tremor or dystonia (Europe only).