Resources
The folders and files below contain some free resources for patients and clinicians to use. All are personally developed by me. Please let me know if there's something not here that you would like to see!
Support Resources
See below for a multitude of resources from national organizations for individuals with aphasia, PPA, dementia, neurodegenerative syndromes, and their loved ones. Click on the icons to link to the websites directly. Text in quotes was directly pulled from each organization's website.
National Aphasia Association
Resources for people with aphasia (including PPA) and their loved ones. Includes educational resources, support groups, information about where to find clinical services, and more.
Lingraphica's JoinIn Aphasia Community
"Connect with hundreds of individuals with aphasia (including PPA) and their loved ones from anywhere in the world. Live online meetups facilitated by speech-language pathologists and other aphasia experts are available 7 days a week for FREE."
Lingraphica's JoinIn Parkinson's Community
"Connect with people with Parkinson’s Disease and their loved ones from anywhere in the world. Live online meetups facilitated by speech-language pathologists and other Parkinson’s experts are available multiple times per week for FREE."
Rare Dementia Support
"Offers specialist social, emotional and practical support services for individuals living with, or affected by, a rare dementia diagnosis. Our vision is for all individuals with, at risk of or supporting someone with one of these forms of dementia to have access to information, tailored support and guidance, and contact with others affected by similar conditions. RDS welcomes people from all areas of society affected by a rare dementia regardless of gender, age, marital or family status, race, ethnicity or sexual orientation."
Minnesota Connect Aphasia Now
"The mission of MnCAN, a non-profit organization, is to improve the life participation of individuals impacted by aphasia through comprehensive programs, education, peer connections and community support. MnCAN offers programs and support for people living with aphasia. We offer a safe place to practice conversational speech, learn new skills and strategies, develop supportive relationships, and set new goals to participate in life. MnCAN also offers support to family and friends of those supporting a person with aphasia."
Mesulam Center for Cognitive Neurology & Alzheimer's Disease
"The Mesulam Center offers monthly support groups for family members and care partners of people living with dementia. We know that each unique diagnosis affects care partners and family members differently, so we offer three support groups based on diagnosis or age of onset: PPA, FTD, and Younger-Onset Dementia. The support groups are facilitated by social work staff. Group participants benefit by sharing experiences, feelings, coping strategies, learning new information about practical solutions and resources, and getting a better understanding of what to expect in the future."
Brooks Rehabilitation
Has support groups for people with aphasia, motor speech disorders, PPAOS, caregivers, and more. Additional runs an intensive comprehensive aphasia program (ICAP) and has other therapeutic resources for people with aphasia, Parkinson's, brain injury, and more.
CurePSP
Their website has a plethora of resources; the link will take you to the support group page. "CurePSP is the leading nonprofit organization dedicated to the awareness, care and cure for three neurodegenerative diseases: progressive supranuclear palsy (PSP), corticobasal degeneration (CBD) and multiple system atrophy (MSA). As a catalyst for new treatments and a cure, we establish important partnerships and fund critical research. Through our advocacy and support efforts, we enhance education, care delivery and quality of life for people living with PSP, CBD and MSA and their families. Science, community and hope are at the heart of CurePSP’s mission and all of our services."
Parkinson's Foundation
Their website has many resources; the link above will take you to their general resources page. "The Parkinson’s Foundation makes life better for people with Parkinson’s disease (PD) by improving care and advancing research toward a cure. In everything we do, we build on the energy, experience and passion of our global Parkinson’s community."
Aphasia Center of California
Offers many online support groups for people with aphasia, PPA, and care partners. Additionally has groups dedicated to topics such as an aphasia book club, music appreciation, and movement and mindfulness. Their website also offers additional resources (e.g., aphasia and PPA wallet cards).
Alzheimer's Association
Their website has many resources; the link above will take you to their general resources page. "The Alzheimer's Association leads the way to end Alzheimer's and all other dementia — by accelerating global research, driving risk reduction and early detection, and maximizing quality care and support."
UCSF Edward and Pearl Fein Memory and Aging Center
There are many excellent educational resources for learning more about dementia through their website, and a lot clinical trial listings. "The mission of the center is to deliver exceptional care for individuals experiencing cognitive challenges, advance research into the causes and treatments of degenerative brain diseases, and educate health care professionals, patients, and their families."
The Association for Frontotemporal Degeneration
"The AFTD's mission is to improve the quality of life of people affected by FTD and drive research to a cure. At the link above are a range of different resources to help people living with FTD participate in the lives of their family, friends, and community after diagnosis." Their website offers much more information and resources than what is at the linked page.
Lewy Body Dementia Association
Link takes you to one page of many detailing available resources. "The Lewy Body Dementia Association is the leading national organization dedicated to improving the lives of those living with Lewy body dementia (LBD), the second most common form of neurodegenerative dementia affecting approximately 1.4 million people in the United States alone. LBDA's mission is to optimize the quality of life for those affected by LBD by raising awareness, advancing research for early diagnosis and improved care, and providing comprehensive education and compassionate support."
ALS Association
Their website has many resources; the link above will take you to their general resources page. Resources include information about healthcare providers, educational resources, and support groups. "Our mission is to make ALS livable and cure it."
Clinical Research
If you are interested in participating in clinical research, there are two primary types:
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1. Observational research: This type of research helps scientists better understand the diseases/disorders of those participating. These studies do not typically provide direct benefit to the people who participate, except that individuals participating may be able to obtain accurate diagnosis from experts in the field, treatment recommendations, and referrals to healthcare providers. Sometimes, observational research includes genetic testing that provides useful information for individuals with hereditary diseases. The main benefit of participating in this research is contributing to science to potentially help others with this disease/disorder in the future.
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2. Interventional trials: This type of research investigates the effects of different types of treatment on individuals with the diseases/disorders of interest to that trial. Treatments can include experimental medications (i.e., "drug trials") and experimental behavioral treatments (e.g., new speech therapy methods). It is important to note that in drug trials, you or your loved one may be assigned to the "placebo" condition, meaning you may not receive the experimental drug itself. It is also important to understand that the methods used in these trials may help all, some, or none of the individuals enrolled. The main benefits of participating in this research include contributing to science, potentially receiving treatment benefit, being connected with experts in the field, and receiving the latest, cutting-edge treatments that are clinically available free of cost.
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The main website where you can keyword search to find clinical research that may be of interest to you is called ClinicalTrials.gov; click the button below to go to that website directly. If you are a clinician, you can use this website to help your patients find research of interest to them, too.