Expanding Your Circle of Support
Access specialized equipment suppliers, research opportunities, legal guidance, and community resources that complement your core MND support network.
Beyond the Basics – Comprehensive Support Resources
While our core support services provide the foundation for your MND journey, we understand that you may need access to specialized equipment, cutting-edge research, legal guidance, or community services that extend beyond what we directly provide. This comprehensive resource directory connects you with trusted external partners and valuable information sources.
Every resource listed here has been carefully reviewed to ensure reliability, accessibility, and understanding of the MND community’s unique needs. We continuously update this directory based on community feedback and emerging developments in MND care and support.
Specialized MND Care Centers
Major academic hospitals across South Africa provide specialized MND care through dedicated clinics and neurology departments. These centers offer multidisciplinary care approaches and access to the latest treatment protocols.
Western Cape
UCT/Groote Schuur Hospital Neurology Department provides comprehensive MND care including diagnosis, ongoing management, and coordination with rehabilitation services. Their multidisciplinary approach ensures all aspects of MND care are addressed.
Contact: 021 404 9111
Western Cape
Stellenbosch/Tygerberg Hospital operates an MND clinic that focuses on patient-centered care and family support. Their team includes neurologists, respiratory specialists, and allied health professionals experienced in progressive neurological conditions.
Contact: 021 938 9111
Gauteng
Wits/Baragwanath Hospital provides MND clinic services through their neurology department, offering both diagnostic services and ongoing care management. Their location makes specialized care accessible to the greater Johannesburg area.
Contact: 011 933 9111
Communication and Technology Support
Voice banking and communication technology services are available through speech therapy departments at major hospitals. These services help preserve your voice and provide alternative communication options as needs change.
Advanced communication technologies, including eye-tracking systems and speech-generating devices, are available through assistive technology suppliers who can provide demonstrations and training.
Voice Banking and Communication
– Voice Banking Information: Available through speech therapists at major hospitals
– Communication Apps: Research through app stores for AAC (Augmentative and Alternative Communication) apps
– Eye-tracking Technology: Contact assistive technology suppliers for demonstrations
Legal and Financial Guidance
Navigating legal matters related to disability rights, benefits, and care planning requires specialized knowledge. Access to qualified legal professionals can help protect your rights and ensure your wishes are respected.
Legal Aid South Africa provides assistance with disability-related legal matters, including benefits appeals, discrimination cases, and basic legal documentation. Their services are particularly valuable for those who cannot afford private legal representation.
The Equality Court system provides recourse for disability discrimination cases, ensuring that people with MND have legal protection and advocacy when their rights are violated.
Provincial Law Societies can provide referrals to attorneys with experience in disability law, estate planning, and healthcare decision-making. Specialized knowledge in these areas can be crucial for comprehensive legal planning.
Understanding available benefits and financial support options can significantly reduce the financial stress associated with MND care. Professional financial guidance helps ensure you access all available support while planning for future needs.
Research and Medical Information
Evidence-Based Information Sources
Access to reliable, current medical information helps you stay informed about MND research, treatment developments, and care best practices. These resources support informed discussions with your healthcare team.
Peer-Reviewed Research:
PubMed provides access to peer-reviewed medical research from around the world, including the latest studies on MND treatment, management, and quality of life research. The database is freely accessible and includes abstracts for most studies.
PubMed Central offers full-text access to many research articles, providing detailed information about study methods and findings. This resource is particularly valuable for understanding the evidence behind treatment recommendations.
Evidence-Based Medicine
The Cochrane Library provides systematic reviews and evidence-based medicine guidelines specifically relevant to healthcare decision-making. Their reviews synthesize multiple studies to provide clear guidance on treatment effectiveness.
The International Alliance of ALS/MND Associations maintains current information about global research initiatives, treatment guidelines, and advocacy efforts that may benefit the South African MND community.
ALS Trial Navigator
Exploring Research and Clinical Trials
The ALS Trial Navigator is a comprehensive online resource that helps people living with MND and their families learn about current clinical trials and research studies. This free tool, provided by the ALS Association, allows you to search for trials based on location, trial phase, and specific research focus areas.
While many trials are conducted internationally, staying informed about MND research developments can help you have meaningful conversations with your healthcare team about potential treatment options and emerging therapies. The Navigator provides clear, accessible information about each study’s purpose, eligibility criteria, and how to participate.
Understanding the research landscape empowers you to make informed decisions about your care journey and contributes to the global effort to find better treatments for MND.