A Message from the Chair of CurePSP’ s Patient and Carepartner Advocacy Committee
Ileen McFarland
Those of us who have walked the walk, either as a patient or carepartner associated with one of the rare brain diseases, know all too well the daily challenges these diseases present. Patients are stunned at their diagnosis and do not know where to turn, and carepartners feel powerless and unqualified in their efforts to comfort and provide care for their loved ones. We here at CurePSP are sensitive to these circumstances. Over the years, we have developed programs and support networks to assist you. We have compiled an array of written materials that offer concrete resources and education about the entire course of disease and disease features: the physical, mental, emotional, and family impact of disease. You can request information simply by calling our office.
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We have some 70 in-person support groups in the U. S. and Canada. We also offer eight online support groups. We can expect both of these numbers to grow. Patients and carepartners come together to learn about and discuss issues and to ease their burden. Well-trained facilitators, some of whom have had personal experience with one of the diseases, lead these support groups. Periodically, the support group leaders schedule professional speakers, such as neurologists, physical therapists, occupational therapists, speech therapists, experts in legal matters, social workers, and hospice representatives, just to name a few. There are also online webinars that address specific subject matter related to the disease, such as managing carepartner stress; physical, occupational, and speech therapies;“ how to” presentations; and others. At all levels— written, online, and through our programming— we continue to expand our educational reach.
We offer Family Conferences at various locations nationwide twice a year. These conferences are for patients and carepartners, and include support group sessions the day before the conference starts.
Additionally, we have approximately 100 Peer Supporters nationwide and others in Australia, Canada, India, Kuwait, and Argentina. These volunteers play a very important role by making themselves available for patient, family, and carepartner phone calls. Most of our Peer Supporters have lost a loved one or a friend to one of the brain diseases and are familiar with the journey. They can provide useful information that will assist the patient and carepartners, or just listen with understanding to your story.
The above, and more, information can be accessed through our website, www. curepsp. org. Our committee and the entire CurePSP team continually work to strengthen and increase advocacy, education, and support programs, with the aim of providing tools to ease the burden of patients and their families.