“Suffering in Silence – On A Quest to Not Leave Anyone Behind” has garnered much interest from several parts of the world (at last count- views from ten different countries). Several people have sent messages with “count me in to help” as the discussion moves along to develop plans to ease the suffering. This follow-up post will act as a response to comments shared, questions asked, and concerns voiced….
The biggest fallacy about national Parkinson’s Disease organizations is that they meet all of the needs of the PD community. While each of the organizations have the best interest of the PD community at heart, each has a very specific focus for the work that they do. For example, the Michael J. Fox Foundation for Parkinsons Research is set up for that specific purpose- Parkinsons Research. The Parkinson’s Disease Foundation has a mission to provide research, education, and public advocacy. The National Parkinson Foundation’s focus is on care (through their Centers of Excellence), research, and support (with their network of support groups). The American Parkinsons Disease Association helps with resources, patient services, education, and raising
Is there duplication of services? Yes…. and no. Yes, because a concerted effort to fight to end this disease should be undertaken on the research front. (More on this later.) No, because each organization was founded on the belief that their mission and focus was meeting an unmet need in the Parkinson’s community.
None of these organizations provide direct financial support to the PD community by way of relieving the burden of physician’s fees, lab test fees, and prescription costs. The fallacy that national PD organizations provide for all of the needs of the people living with this disease continues….
The fact that countless numbers of people that live with this incurable disease and suffer physically, emotionally, socially, financially, etc., continues to grow will come to light soon.
Will the person that can’t afford medications be first in line to volunteer for clinical trials when the bulk of the cost associated with participating is their responsibility?
Will the person whom has experienced being shunned by society and has no one to turn to, be willing to “come out” and speak about being discriminated against?
What will it take for people to realize that those who suffer in silence need to be taken care of before we can move forward to complete our mission of finding a cure?
The answer lies within each and every single one of us who live with PD and are blessed to be able to continue advocating for change, our caregivers, our families, our medical care providers, allied health professionals, researchers, policy makers, and all others that walk with us every day.
What can we do? By all means, continue the wonderful work of raising funds for research, education, advocacy, and related programs. BUT make an effort to reach out to those in need that live in our neighborhoods, towns, cities, and in our social media groups…
because truly… there, but for the grace of God, go I.