Ninety percent of Parkinson’s disease patients are at risk for developing a weaker voice and having trouble swallowing, but a nonprofit in Richardson is working to help patients overcome those issues, while training speech therapists from all over the world to assist them.

“Parkinson Voice Project” founder Samantha Elandary has been working with Parkinson’s patients since 1999, but over the past two years her efforts have taken on a global presence with hundreds of speech therapist learning her approach to treating the disease-related problems.

“It was the hardest project I’ve ever done, but it is the one that has finally gotten us making some headway,” Elandary told Parkinson’s News Today. “It started with her writing a 250-page manuscript, which the charity’s medical advisory board checked “to make sure the neurology was right.”

A graduate from the University of North Texas with degrees in English and communication disorders and, Elandary holds an master’s degree in speech-language pathology.

Parkinson’s program is a two-step effort

The nonprofit has the SPEAK OUT! and LOUD Crowd programs available for its patients. SPEAK OUT! is the first step in a two-part voice therapy approach, while LOUD Crowd keeps Parkinson’s patients in the maintenance phase after they have made substantial progress.

Over 300 speech therapists were trained in her Dallas location between 2012 and 2017, many of them came from outside of Texas to take the program back to their homes.

Over the past two years, the program has grown substantially, thanks to U.S. and overseas speech therapists making the material more accessible worldwide. The accessibility of online training as well as grants to cover the $289 course fee has brought the amount of trained therapists to 1,300, of which 40 were from foreign countries.

One of the program’s recent initiatives is an entirely online course that trains speech pathologists without them actually traveling to Dallas. The program also is working on making their therapy book available online so that non-U.S. residents can gain access.

SPEAK OUT! and LOUD Crowd are available in all 50 states and 13 countries around the world, and therapist training videos are available in both English and Spanish.

The Parkinson Voice Project was a finalist for D CEO’s 2018 Nonprofit and Corporate Citizenship Awards under the “Most Successful Fundraising Campaign” category, and does not charge any of its patients for services. The program is run off of donations and their “Pay It Forward Initiative,” which asks patients who have completed the program to donate their own funds to help other Parkinson’s patients get the same treatment in the future.

“People with Parkinson’s can make such good progress in a short amount of time” with the right therapy, Elandary said to Parkinson’s News Today. “I hate for them not to have access to this therapy that could really make a difference in their lives.”

NEED TO KNOW

The SPEAK OUT! program is broken down into two phases: training and maintenance.

The first phase, training, includes a dozen 40-45 minute sessions with a trained speech therapist, according to Invigorate. The sessions typically take place two to three times a week for four to six weeks, although training varies from patient to patient. Patients also participate in lessons twice a day for 25 days out of the SPEAK OUT! workbook.

The second phase, maintenance, also includes lessons from the SPEAK OUT! workbook each day, as well as meetings once a week to practice speech skills with LOUD Crowd.