There Is A Need For A Parkinson’s Disease Organization

There Is A Need For A Parkinson’s Disease Organization

According to a recent survey, there is a need for a Parkinson’s disease organization that is committed to and focused on a grassroots voice and the consolidation of resources. In response to this, “Parkinson’s People for Awareness & Unity,” an Indiegogo campaign, was recently created to raise money for a new non-profit.

The effort is being led by Richard London, a speaker, author, and cancer survivor who also received a diagnosis of Parkinson’s disease about 9 years ago. When that happened, he immediately began speaking to many different advocacy groups about his battle against the symptoms he was having. He has spoken at several Parkinson’s programs across the United States and Canada.

During the period he was on the road, he became aware of the urgent need for the existence of a Parkinson’s organization that can address research, the whole medical community and those fighting daily against the disease — patients and caregivers.

“We have organizations that focus on important elements of the fight against Parkinson’s disease but no one group has taken the important step of making the individual Parkinson’s patient aware of all those resources. More people struggle with Parkinson’s than ALS, MS, and Muscular Dystrophy combined. I wanted to create a non-profit that centralized the resources available to everyone who is affected by this challenging and overwhelming diagnoses…thus the formation of the Parkinson Community Coalition,” explained London.

London believed he could not accomplish this all by its own so he recruited a larger team of board members, resources and funding to establish a new organization. In particular, he asked for help from Patti Meese and Rich Clifford.

Patti Meese agreed with the Parkinson Community Coalition’s ideas and became a member of the board of directors. She is currently part of the Michael J. Fox Foundation to address Parkinson’s Research as a PPMI Genetics Ambassador, The Parkinson’s Action Network (NC State Director), and the Parkinson’s Disease Foundation as a Research Advocate.

Rich Clifford is a known member of the the Parkinson’s Community. He received a Parkinson’s diagnosis while he was at NASA as an astronaut. He showed his power facing the disease by flying another space shuttle mission and completing a 6 hour space walk in the wake of his diagnosis. There is a documentary about his accomplishments, “The Astronaut’s Secret.”

In other Parkinson’s news, Italian pharmaceutical company Zambon S.p.A. and Newron Pharmaceuticals S.p.A. have announced plans to launch Xadago, a drug therapy for mid- to late-stage Parkinson’s disease, in Germany. The release of the treatment is the result of a partnership between the two companies, and Germany will become the first country to commercialize the drug.

 

Tagged , , .

Isaura Santos graduated with a BS in Cell and Molecular Biology from Universidade Nova de Lisboa and a MA in Communication, Culture and Information Technologies from University Institute of Lisbon (ISCTE-IUL). Her professional interests include science communication, public awareness of science and communication of science through entertainment.

Leave a Comment

Your email address will not be published. Required fields are marked *