CurePSP offers a network of support, to patients and their families, other caregivers, physicians and allied health professionals. If you do not find the information you need here, please call our office at 347 294 2873 and we will help you.
This useful tool will assist in finding a movement disorder specialist near you.
A movement disorder specialist is a neurologist who has received additional training in Parkinson’s disease and other movement disorders including PSP, CBD, dystonia, chorea, tics and tremors. The benefit of seeing a movement disorder specialist is that they are usually on the cutting-edge of knowledge and treatment and are often best equipped to tailor a plan of care specific to you.
Request For Information
CurePSP is happy to provide, free of charge, all available materials pertaining to PSP, MSA and CBD, mailed to the address you provide in the form below.
The information package includes various informational brochures, DVDs, and medical alert cards.
Featured Personal Stories
Each family who is on this journey or has finished this journey has learned a great deal, often with much frustration and effort. Caregivers or family members often draw satisfaction by sharing their stories; we have featured three of these below.
Mary Lou Burhoe
Mary Lou Burhoe, wife of CurePSP Board Chair Emeritus John Burhoe, passed away from PSP after almost 45 years of marriage. Here, her husband tells the moving story of their life together and the poignant last years of their patient journey.
Kathryn Leigh Scott
Geoff Miller, founding editor of Los Angeles Magazine, the first city magazine, and lover of jazz, good beer and the good life, passed away after a battle with PSP. Here his wife, actress and author Kathryn Leigh Scott, tells their story.
Laurence Richardson, military veteran, corporate executive and late-in-life musician, was another tragic victim of PSP. His daughter Patricia Richardson, well-known actress of stage and screen, tells his moving story.
CurePSP has a dedicated group of volunteers who have experience with PSP and related diseases and a commitment to help those who are now suffering. These volunteers are located in most parts of the country and in some international locations. They facilitate in-person groups and online gatherings as well as providing telephone support. We urge patients, families and carepartners to take advantage of this unique resource offered by CurePSP.
In-person Support Groups
CurePSP encourages and organizes activities that foster face-to-face communication, exchange and interaction for comfort and mutual benefit to group members who are carepartners, family members, friends and patients with PSP, CBD, MSA and related diseases.
Online Support Groups
CurePSP-sponsored online support groups allow participants the opportunity to interact with other patients, caregivers and family members affected by PSP, CBD, MSA or related brain diseases by using their computer, telephone (charges may be incurred) or both.
CurePSP Peer Supporters are volunteers who are available to offer support by phone or e-mail. There may not be a supporter in your immediate area, but we encourage you to call any one of the contacts on this list. As you may know, your best resource is probably the person who is currently going through or went through what you are experiencing.
Prime of life neurodegeneration imposes not only suffering for the patient but crushing burdens on families and other caregivers. CurePSP is the place to turn to for people affected by or involved with PSP and other prime of life neurodegenerative diseases.
The Happy Hours, by CurePSP spokesperson, Kathryn Leigh Scott, is a great source of guidance on how to maintain a social existence in the face of isolation due to a prime of life brain disease.
“With the health of her husband, Geoff, rapidly deteriorating, Kathryn Leigh Scott couldn’t help but notice how small and isolated their world had become. Between caregiver and patient, medical equipment and medicines, they began to lose contact with friends, the outside world, and even each other. The road to goodbye had become a lonely one.
Kathryn transformed their home from a place of illness into a place of healthy goodwill where their friends could stop by. For a few hours every day, their master bedroom became an intimate, lively space filled with drinks, food, laughter, and music. These precious moments enlightened their home and their hearts, and ultimately, led Kathryn and Geoff back to each other.
Filled with warmth, reflection, and authenticity, Kathryn’s story is as much a guide to gracious hosting as it is compassionate support for caregivers. For no journey is ever so bright as the one willed with friends, memories, and—above all—love.”
CurePSP is pleased to offer this free forum as a place where you can find support within the communities of patients, families and carepartners. Here, you have the opportunity share daily living tips, frustrations and feelings that all result from living with or caring for a person affected by one of these diseases. This is an intimate conversation where you are free to talk to other candidly who may be sharing your experiences.