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Parkinson’s Disease Foundation Invites John Baumann to Conference

October 26, 2010

For Immediate Release
Contact: Melissa Barry
Phone: (212) 923-4700
Email: mbarry@pdf.org

Louisville, Kentucky Resident Attends Parkinson’s Research Advocacy Program

New York, NY, October 21, 2010 — Local resident John Baumann is participating in the Parkinson’s Disease Foundation (PDF) Clinical Research Learning Institute (CRLI) this week in New Jersey.  He joins 40 other people living with Parkinson’s disease to learn about ways to contribute to new treatments and help find a cure for the disease.

Mr. Baumann was diagnosed with Parkinson’s disease when he was 41.  A practicing attorney for 23 years, he was inspired to change his life after his diagnosis.  He began teaching undergraduates at the University of Louisville, which he found to be more personally rewarding. He also founded LearnSuccessToday.com, an inspirational speaking and consulting business.  Because of his experience with Parkinson’s, he often focuses his inspirational talks on the role of the family in adjusting to illness and on the power of a positive attitude.

Mr. Baumann hopes that his talks serve to raise awareness for Parkinson’s and inspire others to take action.  He says that his training in clinical research advocacy will be the next step in this work.  At the Learning Institute, he will attend three days of courses, led by national experts, who will cover topics such as ‘the basics of clinical research’ and discuss the new therapies that are being studied by scientists to treat Parkinson’s.

When asked what he hopes to accomplish by attending the Learning Institute, Mr. Baumann emphasized his goal of bringing any lessons learned back home to Louisville.  “I want to be trained to become an advocate because there is awareness needed about Parkinson’s clinical trials, not only on the national level, but also in my community.  I hope to work with people with Parkinson’s in Louisville to ensure that we all have access to the latest research information and to spread the word about the importance of volunteering for trials, so that we can find new treatments and a cure for Parkinson’s as quickly as possible.”

Executive Director Robin Elliott said, “The Parkinson’s Disease Foundation believes that inclusion of the perspective and experiences of people with Parkinson’s has the potential to benefit the clinical research process and therapies development. We are committed to providing the tools and resources necessary to make this happen – in the hope that the Clinical Research Learning Institute provides the foundation for these motivated consumers to become engaged and involved in a process that directly impacts their current quality of life and strives to find a cure for this debilitating disease.”

For more information about Mr. Baumann’s work or the Clinical Research Learning Institute please contact PDF at (800) 457-6676 or info@pdf.org or visit www.pdf.org/crli.

About Parkinson’s Disease

Parkinson’s disease is a progressive neurological disorder that affects nearly one million people in the US.  Although promising research is being conducted, there is currently no cure for Parkinson’s.

About the Parkinson’s Disease Foundation

The Parkinson’s Disease Foundation (PDF) is a leading national presence in Parkinson’s disease research, education and public advocacy. We are working for the nearly one million people in the US who live with Parkinson’s disease (PD) by funding promising scientific research to find the causes of and a cure for Parkinson’s while supporting people with Parkinson’s, their families and caregivers through educational programs and support services. Since its founding in 1957, PDF has funded over $85 million worth of scientific research in Parkinson’s disease, supporting the work of leading scientists throughout the world and has dedicated over $34 million to support people with Parkinson’s and their families and caregivers through its educational and advocacy programs.

At the heart of PDF’s work is the participation of people with Parkinson’s.  Whether it is through its People with Parkinson’s Advisory Council, which advises PDF on all aspects of its work, or the Clinical Research Learning Institute, which trains people with PD to play a part in clinical research – the perspective of people living with Parkinson’s ensures that PDF’s work is on target and meets the needs of the community.

About the Clinical Research Learning Institute

The PDF Clinical Research Learning Institute is a novel three-day program that prepares people living with Parkinson’s disease (PD) to be part of the clinical research process – the stage of treatment development that brings new, and much-needed, therapies for Parkinson’s from “bench to bedside.”   The Learning Institute was launched in 2008, based on the premise that all too often, the perspectives and experiences of people with Parkinson’s are excluded from the decision-making that advances new therapies.  Graduates from the Learning Institute are prepared to return to their home communities to engage in a range of activities that include educating the community about the importance of clinical research and study participation and serving on clinical study oversight and advisory committees.

Testimonials

What a wonderful presentation, John! You were wonderful and I am so grateful you shared your story. We were receiving excellent feedback in the chat too:

That was fantastic information, thank you for your candor and humor! Awesome 🤩 talk and info ! Thanks much. It’s hard, thanks for sharing. Thank you for sharing your story and for your positive attitude. It’s important to hear this message. This was just what I needed. Thank you so much. you are an inspiration, thank you!

As we stated, we hit 100 participants at 3:09!

Thank you again,

Eden Feldman, LCSW Associate Director, Community

I do not have the words to thank you enough for making the trip to Dallas to do two presentations for us at CC young. You truly are special and a rockstar and clearly touched many lives today. It is a victory! I was able to run all over campus and welcome guests and host you. It was a victory. Thanks to you for helping me think that way. We will catch you on the next round. Get some rest my friend. Safe travels. And know we love you from CC Young and Dallas!

Patty CC Young and Dallas

“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