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Parkinson's and Movement
Disorders Center

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General Caregiver Resources

Helplines  

  • AARP Caregiving Helpline/Assistance (Phone #): 877-333-5885 
  • Family Caregiver Alliance Helpline/Assistance (Phone #): 800-445-8106 
  • Well Spouse Association (Phone #): 800-838-0879 
  • ARCH National Respite Network and Resource Center: 919-490-5577 
  • Family Caregiver Toolbox by the Caregiver Action Network. For inquiries and assistance, call 202-454-3970. 

Community  

  • To connect with other caregivers: visit Connecting with Caregivers by the American Psychological Association. 
  •  To coordinate meals and help for friends and family: Lotsa Helping Hands 

Information  

  • Guide and Checklists for Family Caregivers: Next Step in Care 
  • For financial, legal, and insurance issues: Call the Medicare Rights Center at 800-333-4114 for information about Medicare and how to claim insurance; call Patient Advocate Foundation at 800-532-5274 for more information on how to ensure the person you are caring for is receiving the best resources possible. 

 

Alzheimer’s Disease and Related Dementias Caregiver Resources

Helplines

  • Alzheimer’s Association 24/7 Helpline: 800.272.3900 (for information and resources in 200+ languages). 
  • The Live Chat on the Alzheimer’s Association page also is a resource to ask questions. 
  • Inquiries Form provided by the Alzheimer’s Association that will respond within 24 hours. 

Community 

  • https://alzconnected.org/ - an online support group for people living with dementia or related health issues and people who care for them.

Information 

  • Information about wandering (a big risk for people with memory loss or related symptoms)
Ataxia Caregiver Resources

Helplines  

  

Community  

  • Parents of Kids with Ataxia support group on Facebook 
  • Ataxia Spouses and Partners support group on Facebook 

Information  

  • Coffee Chats via Zoom for information and a sense of community 
  • National Ataxia Foundation (NAF) YouTube Channel with Webinars 

 

Dystonia Caregiver Resources

Helplines

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Community 

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Information 

  • https://dystonia-foundation.org

    https://blepharospasm.org

    http://www.cdtorticollis.org

    https://rarediseases.org/organizations/dystonia-society/

    https://www.globaldystoniaregistry.org

    https://www.tylershope.org

Huntington's Disease Caregiver Resources

Helplines 

  • HDSA Helpline at 1-880-345-HDSA (1-800-435-4372), which is available Monday through Friday from 9 am - 5 pm EST. 
  • HDSA Email Helpline: HDSAinfo@HDSA.org. Responses might take up to 2 business days. 

Community 

  • Hey Peers:  The Huntington's Disease Society of America (HDSA) uses this platform to provide an online HD support group.

Information 

  • A Caregiver Guide for HD Families: a guide to help caregivers better understand the issues, behaviors, and situations that most impact family caregivers. 
  • General resources for Huntington's Disease with an email for inquiries and information about support online: https://www.hdyo.org/c/1-get-support-resources  
  • HDSA National Youth Alliance: an email list to sign up for if you know someone with HD who has children and want to learn how to explain HD to them. 
  • HDSA Resource Library for more information about HD and other tips. 
  • Family Education Days hosted by local HDSA Chapters. This could also be a good way to meet other people affected by HD in your community. 
  • HDSA YouTube Channel with quick videos on a variety of topics. 
Multiple System Atrophy/Autonomic Disorders Caregiver Resources

Helplines

  • Patient Support Line for patients with MSA: 866-737-5999. The line is staffed from 9 AM to 5 PM EST, Monday through Friday. Voice messages are encouraged if you do not get a response immediately. 
  • Mission MSA Patient Support Scheduler to arrange virtual meetings or phone calls with the Patient Support Services Manager. 

Community 

  • MSA Coalition with local and regional support groups and a Facebook page where people can interact with each other. 

Information 

  • Mission MSA Resource Library: for digital and downloadable resources including videos, infographics, brochures, and more. 
Parkinson's Disease Caregiver Resources

Helplines 

  • Parkinson’s Foundation Helpline (Phone #): 1-800-4PD-INFO (1-800-473-4636). Helpline specialists can assist you in English or Spanish, Monday through Friday, 9 AM to 7 PM EST. 
  • Parkinson’s Foundation Helpline (email): Helpline@Parkinson.org

Community 

  • PD Conservations: a place for caregivers to ask questions and connect with others living with the disease who want to be part of a network of support. 
  • American Parkinson Disease Association Virginia Chapter, resources, supports groups, and webinars programs

Information 

    • Parkinson’s Foundation: A website with information for caregivers in each step of their experience with helping someone with Parkinson’s disease. 
    • Caring and Coping: A Care Partner’s Guide to Parkinson’s Disease: Tips and tools to help prepare caregivers (~180 pages)
    • Medicare and Parkinson’s: What you Need to Know
    • Power Over Parkinson's Care Partner Education Resources 
    • American Parkinson Disease Association (APDA) Local Resources, Support and Events

 

 

Progressive Supranuclear Palsy and Corticobasal Syndrome Caregiver Resources

Helplines

  • Hope Line: 800-457-4777 or email at info@curepsp.org or fax at 410-785-7009

Community 

  • Featured Personal Stories of families who have experienced the journey of PSP to help create a community for people to share their stories. 
  • CurePSP Forum: a place to find support within communities of patients, families, and carepartners. 

Information 

  • CurePSP Audiobook Library for information on PSP, CBD, and MSA
  • CurePSP Brochure Catalogue: a digital resource liberty where you can also order patient and family information packets. 
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Virginia Commonwealth University
Parkinson's and Movement Disorders Center
Box 980599
Richmond, VA 23233
804-628-2022 (for non patient care inquires)
pdcenter@vcuhealth.org

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