A discussion with Parkinson’s Africa on August 9, 2023 by George Ackerman, Ph.D, J.D.
Parkinson’s Africa exists to support and empower Africans impacted by Parkinson’s disease (PD)—this includes the family, friends, relatives, carers, etc.—of those diagnosed.
We advocate on behalf of the Parkinson’s community in Africa, fund, organize, and support awareness campaigns, provide appropriate educational materials in local languages on Parkinson’s disease in Africa and how to effectively manage the condition, and offer support and activities. We help facilitate access to clinical services for people living with Parkinson’s disease in Africa, and we intend to continue looking for ways to help achieve an equitable medication pathway for Parkinson’s patients in Africa. This, of course, would not be possible to achieve without our invaluable partners.
Can you tell me more about your organization?
Parkinson’s Africa is fully independent of any political or religious party. We do not directly provide medicine or in-depth clinical or medical services, but instead focus on raising awareness, educating, and supporting anyone in Africa affected by Parkinson’s disease.
We are a UK-registered charity that works with a variety of local Parkinson’s charities, partners, support groups, and medical professionals to support and empower Africans impacted by Parkinson’s disease. We were founded on the simple belief that no one with Parkinson’s disease should have to go through it alone or without the education, support, and healthcare resources they need to best deal with it.
We know, from our own first-hand experiences and from published studies, that people across many parts of Africa have the wrong idea about Parkinson’s disease. This misunderstanding and misinformation often lead to people with the disease being stigmatized and left alone, which makes an already difficult disease even more difficult to deal with. Clinical and social care, support, and medication are very limited in some places, and in others, they don’t exist at all. This makes it very hard to live well with the disease and keep it under control. In addition, Africans affected by Parkinson’s disease are grossly underrepresented in Parkinson’s research studies and clinical trials.
We were established to address the needs identified above; to champion the causes of Africans impacted by Parkinson’s disease; and to unify, coalesce and strengthen the African Parkinson’s disease community.
An empowered African Parkinson’s disease society. By that, we mean communities across Africa where those diagnosed with Parkinson’s disease, their families, carers, and other loved ones, have the information, tools, and resources they need to take control of the management of their condition.
To transform the Parkinson’s disease landscape across Africa, community by community, into societies where those affected have equitable access to quality healthcare, research, support, information, and educational resources.
Our Core Values
Compassion Integrity Equality Excellence Collaboration
What is your passion and how did you get involved in Parkinson’s awareness and hope for a cure?
Within our organization, we have people with personal experiences of living with, or caring for someone with, Parkinson’s disease in Africa. As such, we have a solid understanding of some of the unique challenges you may be facing on this journey. Everything we do is guided by our belief that no one should have to deal with these challenges alone and that everyone should have equitable access to Parkinson’s information, support, and healthcare resources that are necessary to making informed health choices and leading dignified lives.
What type of goals do individuals with Parkinson’s have when working with you?
To support, education, advocate and prioritize health. See https://www.parkinsonsafrica.org/programmes/
What type of training and how long are the programs?
We are committed to assisting and collaborating with our partner organizations in the delivery of a wide range of programs.
Parkinson’s Africa rarely provides direct services to beneficiaries, but this does not mean we do not support and engage with people affected by Parkinson’s disease, quite the opposite. Africans affected by Parkinson’s disease frequently contact us to ask how we can help or simply to share their stories, ask to get involved, or seek support and information about Parkinson’s disease to assist loved ones. Once we have identified an individual’s needs, we determine the level of support or services that are required, appropriate or relevant to the individuals, we signpost and put them in touch with our partner organizations that are most suited to assist.
Our approach is to build capacity and invest in people, partners and programs on the ground so the partners we work with can best assist the beneficiaries by leveraging their local knowledge and experience.
How can we support Parkinson’s Africa through awareness?
We believe that, by working together, we can significantly raise the levels of awareness and understanding of Parkinson’s across Africa, reduce misconceptions and corresponding stigma surrounding the disease, and transform the Parkinson’s disease landscape across Africa.
Funding for Parkinson’s Africa
Janet Owens Legacy Fund
Janet Owens (1930-2016) worked as a doctor across four continents, including four African countries. She loved Africa, where she had also spent her early years. Living with Parkinson’s for the last decade of her life, she wanted to support Parkinson’s research and services after her death.
For more information see https://www.parkinsonsafrica.org/about-us/our-supporters/
What would you like to see as a future goal for your programs?
Reaching awareness throughout the world.
What events do you participate in?
Parkinson’s Africa works with partners and beneficiaries on projects to empower Africans affected by Parkinson’s disease.
Advocacy is a powerful tool in the fight against Parkinson’s disease. It involves speaking up on behalf of those affected by the disease, with the aim of bringing about positive change. Advocacy can take many forms, from lobbying governments for better healthcare policies to raising awareness in the general public.
Education about Parkinson’s disease is critical not only for those directly affected by it, but also for the public and medical professionals.
Parkinson’s Africa believes that education is critical for bringing about positive change in Africans living with Parkinson’s disease. Patients’ and carers’ quality of life can be improved by learning more about the disease, its causes, symptoms, treatments, and how to live better with the condition. Many health professionals and the general public in Africa are unaware of Parkinson’s disease, emphasizing the need for educational materials and training courses on the disease. We collaborated with several partners and stakeholders to develop educational materials and projects that raise public awareness and knowledge about Parkinson’s disease.
Read about how our projects help Africans affected by Parkinson’s disease gain access to health and clinical resources and support.
Parkinson’s Africa does not directly provide clinical services to people with Parkinson’s disease or their careers, but instead collaborates with local partners, medical professionals, other foundations, and hospitals to enable and facilitate access to clinical services where possible. We are also part of the PD Avengers Medication Equity Group, which seeks a long-term solution to ensure equitable access to medication in hard-to-reach communities.
Among our projects is the formation of partnerships with medical professionals and academics who help us develop health materials about Parkinson’s disease, provide health screenings and examinations to individuals, and facilitate medication access. We presently help over 400 people gain access to medication thanks to our local partners and organizations. If you’d like to partner, fund, or provide any of the clinical services above, please contact us.
How does this also assist the caregivers?
Support is an important program that spans multiple projects and is aimed at improving the well-being of our beneficiaries.
Parkinson’s Africa provides a variety of support services to our beneficiaries, predominantly through delivery partner organizations. These services include home visits, telephone support, facilitating access to face-to-face or virtual support groups, occupational therapy and simply providing educational materials in a variety of African local languages.
TrapCAf, a multi-site research initiative funded by the NIHR, has had a significant influence, funding, and guidance on our support group program. Parkinson’s Africa is involved with the project’s Community Involvement and Engagement (CEI) work stream, learning about the lived experiences of people with Parkinson’s and their carers from health professionals, community leaders, and beneficiaries.
How can someone get in touch? What is your website?
How can others also become advocates for awareness?
Whether you are a person with Parkinson’s disease, a career, a medical professional, a partner organization, a volunteer, a funder, or a supporter, we can all take part in advocating.
If you had one final statement or quote you could leave for the Parkinson’s community, what would it be?
If you are an African whose life has been impacted by Parkinson’s disease, you are at the center of everything we do. You are the heartbeat of this organization and looking for ways to continuously support and empower you, your relatives, friends, loved ones, and community is the reason for our existence. We are family; it is as simple as that.
Parkinson’s Africa (2023). What is Parkinson’s? Retrieved from https://www.parkinsonsafrica.org/