Alianza Iberoamerica de Parkinson

Parkinson’s Disease is severely disabling in parts of the Spanish speaking world because of late diagnosis and poor treatment. Parkinson’s robs one ability to walk, talk, eat and smile. Some of this suffering is preventable.

Parkinson’s Disease is a growing pandemic with 7-10 million worldwide and it’s prevalence has doubled in the last 25 years and will double again in the next  20 years if we don’t find a fight for change. 2%  of people over 60 years of age but in Australia 20% of those diagnosed are under 50. Statistics don’t exist in many Spanish speaking countries. The whole family is affected economically and emotionally.  

In the west treatment exists. Parkinson’s disease can still be disabling and painful but in Spanish speaking countries treatment can be substantially lower (each country varies). I’m a founder of an iniative called Alianza IberoAmerican de Parkinson. This initiative is needed because:

• Patient’s lack self management and lifestyle and trustworthy disease education would help address – false information (cure scams), social stigmas, dangers of isolation and inactivity and depression that lead to rapid disease advancement.
• Many countries don’t have exercise and multidisciplinary programs that help prevent progression and advocacy and awareness raising is needed for this
• and more health professionals need training in Parkinson’s disease. 

The Idea

The idea is to provide accessibility to Parkinson’s resources to patients, families, health professionals and associations. In turn we can unite for training opportunities across Iberoamerica (The Americas and other Spanish speaking locations). This will strengthen capacities to prevent disease progression, raise consciousness and educate professionals better in Parkinsons in Spanish and ultimately create advocacy for health service improvement including exercise and other key multidisciplinary programs. 

Such an alliance of support has never been done in Spanish. Everyone has been working in silos often reinventing the wheel. With COVID forcing leaders like cofounder Sonia Elizabeth and I  online as we cannot hold in-person meetings. The demographic is older and  some have struggle to adapt to zoom meetings but our community leaders, health professionals and associations are now online, zooming and doing webinars and we realised that we are closer than we thought and can work together.  

Our approach is unique as we’re not rushing to create new resources, we’re bringing together what already exists with the help of the World Parkinson’s Congress, who is collating resources in English. Our work will be to have such a directory in Spanish. International health associations exist for professionals but patient friendly resources will be prioritised. 

The Project has grabbed the attention of the target population in the Parkinson’s community. Three big associations are eager for us to share their Spanish resources. Over 10 countries are represented so far including associations, advocates and professionals. We surveyed their thoughts concerning the needs of their group and their commitment to help and resources they have. This has determined our aims. 

We are doing education webinars in partnership with others and next is with the Mohammad Ali Parkinson’s Foundation and the Federacion Espanola of Parkinson. The comments we are receiving show the difference we’re making in our target population and the ageement they have to see this succeed.

The potential

 “Scaling up means expanding, adapting and sustaining successful policies, programs, and projects in different places over time to reach a greater number of people”(Hartmann and Linn, 2008). This exactly the aim of this initiative – Our goal  is to increase the quantity, quality and accessibility  of resources available concerning Parkinson’s disease in Spanish to improve the quality of lives of people with Parkinsons throughout the Spanish speaking community.

Our strategies for Scaling Social impact include expanding our network of affiliated organisations connected by the shared goals and activities to disseminate a directory of resources, promote courses for professionals, and raise awareness together (online, printable, videos and webinars),

Our business plan focuses on these aims and encourages advocacy for better services and policies concerning Parkinson’s treatment. Ultimately we’d like to evaluate lessons learnt in policy and service initiatives and advocacy to create  context specific reviews that could guide further efforts. 

Future investment would help:

Currently we have no funding for awareness campaigns, paid staff or a web platform. We have volunteers and willpower. Future investment could create a technological platform, help cover costs of awareness raising and ultimately we’d like to provide leadership training across our partners organisation to build up effective and discerning leaders who can disseminate resources and lead awareness raising campaigns in a latino context. 

So what next… let us know if you can help.