Midwest Young Onset Parkinson Conference

While Parkinson’s disease most commonly hits patients later in life, it also impacts younger people. For that group of people and their families, Team Theracycle would like you to know about an Ohio event upcoming in mid-November 2012: The Midwest Young Onset Parkinson Conference.

Our friend, Julie Sacks, Director, of the APDA National Young Onset Center in Winfield, IL was kind enough to provide details below.

If you’re in the midwest, certainly worth attending. If not — please consider making a donation to support the Conference.

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The American Parkinson Disease Association (APDA) National Young Onset Center and the National Parkinson Foundation (NPF) will hold the 7th in a series of young onset conferences in Cincinnati, OH – November 16-17, 2012.

Yes, you did read that correctly, it is a conference for young people with Parkinson’s disease (PD).  Many people are still don’t think of the terms young and Parkinson’s as ones that go together, yet up to 15% of the  1.5 million Americans with the disease, are considered “young onset.”

What exactly does “young” mean when it comes to PD?  From a medical perspective, “young onset” is strictly defined as diagnosis under the age of 40. It is not uncommon, though, to see it defined as under the age of 50 (sometimes even 60).  As a general rule, people who are working full-time at the time of diagnosis will consider themselves “young onset.”

People with young onset Parkinson’s disease tend to experience a slower progression of the disease and a smoother course; however, they live with it for a much longer period of time than those diagnosed later in life. As a result, it is critical that young people with Parkinson’s disease and their families attend to issues such as long-term medication management, family relationships, and planning for the future from a financial and legal perspective.  The upcoming Midwest Young Onset Parkinson Conference will include presentations by experts in these areas and more.

The conference begins the evening of Friday, November 16, with a Meet and Greet Reception facilitated by local Parkinson’s advocate, Ben Contra, and featuring an “Ask the Doc/Open Mic – Q&A Session with Dr. Alberto Espay.  Friday night’s program will be interactive, offering participants an opportunity to meet others who, like them, are managing the disease at an early age.

The conference will continue with a full agenda of speakers on Saturday, November 17.  If you are interested in attending the conference, visit our Website to view the agenda or register now. For those unable to travel to Cincinnati, keynote presentations on Saturday will be Webcast live via the Internet.  Pre-registration for the Webcast is recommended.  Although the program is geared toward people with young onset Parkinson’s disease, much of the content is relevant to people of all ages with PD.

Both sponsoring organizations provide programs and services for people with Parkinson’s disease, their family members and healthcare providers.

For additional information, please contact the APDA National Young Onset Center at 877.223.3801/apda@youngparkinsons.org or the National Parkinson Foundation at 800.4PD.INFO/contact@parkinson.org.

Parkinson’s Unity Walk Coming Up April 28

As we hope you know, the Theracycle team is an active supporter or organizations and initiatives that support fundraising for research for treatments of Parkinson’s disease. In that vein, we’d like to share the news of the 18th annual Parkinson’s Unity Walk, which is upcoming April 28. Hope many of you can participate/donate. VERY worthy cause and an inspirational event!  Keep Moving!!

More details in the this press release…
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Davis Phinney Foundation: Exercise helps people with Parkinson’s “live better” today

The Triumphant & Victorious Davis Phinney-- Theracycle's Hero

As a company who builds exercise bikes for people with Parkinson’s and other movement disorders, it should come as no surprise that Davis Phinney is a hero of ours!

For those who don’t know of him, Colorado-based Davis Phinney is a retired professional cyclist (and 1984 Olympic medalist) who at the age of 40 was diagnosed with early onset Parkinson’s 12 years ago. A perpetual motion machine, Davis has led bicycle tours and conducted cycle-related fundraisers for PD research for many years.

In 2004, he founded The Davis Phinney Foundation (DPF), which is dedicated to helping people with Parkinson’s disease to “live well today,” through educational programs, events and, the funding of research focused on exercise, speech and other quality of life therapies.

DPF-funded research includes support for multiple projects directed by Theracycle’s own official Medical Advisor, Boston University Prof. Terry Ellis, PT, PhD, NCS including her 2010 study: “Factors Associated With Exercise Behavior in People With Parkinson Disease.”

For all these reasons, it is with great pride, that we share this first guest blog post from the tremendous team at the Davis Phinney Foundation — among the most dedicated and enthusiastic Parkinson’s exercise ambassadors we know!

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Contact Congress Today to Save SBIR

Call or Email Congress NOW to Save SBIR

If you’ve been following the Theracycle Blog, you may know that we recently received a hard-to-land NIH-SBIR grant to fund research and product development of new Theracycles to benefit people with Parkinson’s disease..

What you may not know (but should)–  is that the 30 year old SBIR (Small Business Innovation Research) program is a political hot potato on Capitol Hill in Washington, D.C. Of real concern to us is the possibility of the expiration of SBIR programs on December 16, 2011!!

For all of you who share our belief in the importance of continued federal funding of SBIR, please read this urgent appeal from U.S. Senator Mary Landrieu with her clarion call for us to call or email our U.S. Representative to express our strong support to save SBIR…

Please Tweet this message to “Contact Congress Today to Save SBIR”  http://bit.ly/v01T87

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