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John Baumann becomes Ambassador for Parkinson’s Research

November 5, 2010

Parkinson’s Disease Foundation Graduates 40 New Ambassadors for Parkinson’s Research, Expanding its National Network

– Oct 29 2010

Forty people living with Parkinson’s disease (PD) recently became the newest members of a research advocacy network led by the Parkinson’s Disease Foundation (PDF).  Last week in New Jersey, the group completed a three-day training program, the Third Annual PDF Clinical Research Learning Institute, which has prepared them to advocate for the inclusion of people with Parkinson’s in therapy development.

The new class is composed of scientists, teachers, local business owners, nurses and other diverse individuals from 22 states.  During the in-person training program, research advocates participated in courses focusing on the science of Parkinson’s and strategies for influencing research decision-making.  The faculty included national experts, such as representatives from the National Institutes of Health (NIH) and clinical researchers.

The newly-trained research advocates expand PDF’s network to comprise over 100 individuals from 36 states.  Among their activities, research advocates are educating their communities about clinical study participation; partnering with industry, academia and government to ensure the voices of people with Parkinson’s are heard; working with scientists to design, run and review research studies; and serving as formal representatives on local, state and national clinical research review and advisory boards.

Doug Lindley of Montgomery, Alabama, is one of the new advocates.  Mr. Lindley said of his training, “Those of us living with Parkinson’s day in and day out have an urgency to find some way to reverse or slow down the disease that impacts our lives.  By serving as a clinical research advocates, and educating the newly diagnosed about clinical trials, we can empower others and advance medical research to come closer to this goal.  After seeing the energy and determination of my 39 colleagues this past week, I feel hopeful that we can spread this enthusiasm to others across the country and make a difference in Parkinson’s research.”

Faculty member Mickie Welsh, R.N., D.N.Sc., commented on the training, “It is important to recognize that we as health care professionals share in the responsibility to expand Parkinson’s research advocacy across the country.  So, as the newest class of PDF research advocates returns home to begin its work, I will also be working to establish a clinical research consortium in southern California, that will build upon the enthusiasm we experienced at the Learning Institute.” For Places To Buy cannabis seeds denver Colorado some plants.

If you would like to learn more about this program or if you would like to speak with PDF about partnering with a research advocate at your institution, clinical study or support group, please call (800) 457-6676, email info@pdf.org or visitwww.pdf.org.

About PDF Research Advocates

PDF research advocates are a group of more than 100 individuals active in 36 states who work to bring educated consumer voices to important issues in Parkinson’s therapy development.   Research advocates develop their skills through an annual three-day program, the PDF Clinical Research Learning Institute, and continue to grow their advocacy knowledge and connections through continuing education opportunities and tools provided by PDF.  The Learning Institute was launched in 2008, based on the premise that all too often, the perspectives of people with Parkinson’s are excluded from the decision-making that advances new therapies.  It is building a growing network of research advocates who are actively collaborating with scientists, government agencies and private industry, to change the role that people with Parkinson’s play in the design and implementation of Parkinson’s research and programs.

Testimonials

“After two years of not being able to hear speakers in person , I was thrilled to have John Bauman as a speaker at our “ Living Well With Parkinson’s’ Gala!. Not only was John engaging and inspiring to get to know off stage , on stage he truly drove home the theme of empowerment to our audience and left our growing community of attendees with several “ aha “ moments and desire to hear more. He spoke from personal experience as a Parkinson’s patient ,inspiring the audiences motivation to truly wish to make a difference and uniting us all in our humanity. Attendees after listening to John , felt inspired to make a difference in the world and do their part to create change for those living with Parkinson’s. My only regret was not being able to spend more time with John and I look forward to having him speak again to our audience.”

Naomi Wong WPP Program Manager

John’s message of hope, inspiration and laughter was ideal for anyone living with PD. He was extremely flexible and a delight to work with.

Leisha Phipps, MSW Program Director - Dallas Area Parkinson Society

We all felt inspired and enjoyed listening to your presentation. Even though we are not living with Parkinson’s, we felt boost of motivation to continue helping those who are living with this disease. I am motivated to make more personal phone calls to people living with PD and asking how they are doing. Sometimes that “extra” bit of kindness truly makes a difference to someone. I am also motivated to research program ideas and partner with other organizations that may have similar values.

I learned that life is unexpected and that you cannot control it. What matters is your attitude!

-Great way to end the day, brave man, thank you very much!

-Good, excellent, great, outstanding speaker, very moving!

-Inspirational who just “gets it”

-Positive thinker and very funny!

-Honest speaker but also humorous!

Parkinson’s Society of Southwest Ontario, Canada, Symposium Keynote Presentation

“whatever hand life deals you, whatever life changing adversity you have to endure, you still have some control over it.” “You don’t have to just to live well,” he advises,” but live an Amazing Life.” The formula he proposes: Faith in yourself, discipline, determination, desire, intensity, and inner strength.

MARY SPREMULLI VOICE AEROBICS

Yes, you touched every person at our conference, who will in turn change and impact so many others. The feedback from our participants was overwhelmingly positive. You are the only speaker to ever receive a standing ovation. Thank you for taking time to share, motivate and inspire. We are blessed to know you.

DIRECTOR OF MARKETING REHABILITATION HOSPITAL

I will be honest. During the first 10 minutes of your presentation, I started reading work related material on my laptop. For surely, I had watched your You-Tube and seen your videos and knew what to expect. Surely, as a therapist I had studied this disease, the pathological components, the psychological components, the treatment alternatives……..Surely, I understand it.

Not so much. You caught my attention and I was enthralled. You were able to couple the impairments you experience with the emotions felt. You walked us through your life with the disease through “your eyes”. A perspective that a therapist/nurse rarely has the chance to hear. We get so busy telling patients how to deal with x, y and z, but our eyes are blurred by the science of it all most of the time.

You did it through truth, Through your humor, humility and determination to tell your story. One that most deservedly needs to be shared.

I will advocate to have you share your story. I appreciate your determination, diligence and dedication.

CHIEF EXECUTIVE OFFICER REHABILITATION HOSPITAL