CurePSP Network of Support
CurePSP offers a network of support to patients, 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.
CurePSP Centers of Care are healthcare centers recognized as being able to provide quality care for the specific needs of PSP and CBD patients. This allows us to provide recommendations to patients on where they might find suitable care.
Find a Doctor
This useful tool will assist in finding a specialist who is familiar with PSP, CBD, MSA, and related diseases near you. This specialist is often called a Movement Disorder Specialist (MDS). An MDS is a neurologist who has received additional training in Parkinson’s disease and other movement disorders including PSP, CBD, MSA, dystonia, chorea, tics, and tremors. The benefit of seeing an MDS 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 network 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.
Caring for a loved one can be very rewarding, but it also involves a lot of stress. Caregiver stress can be particularly damaging, since it is typically a chronic, long-term challenge. You may face years or even decades of caregiving responsibilities. It can be particularly disheartening when there’s no hope that your family member will get better.
If you don’t get the physical and emotional support you need, the stress of caregiving leaves you vulnerable to a wide range of problems, including depression, anxiety, and burnout. And when you get to that point, both you and the person you’re caring for suffer.
CurePSP offers a growing library of resources to offer caregivers, to aid them in their most difficult moments.
There are a number of clinical trials being undertaken at any given time that may present opportunity for patient participation. CurePSP will endeavor to keep this list as up to date as possible. Please click below to study and learn more about clinical trials and to find out if there are clinical trials currently being undertaken in your area.
CurePSP is pleased to offer this free forum as a place where you can find support within the communities of patients, families, and caregivers. Here, you have the opportunity to 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.