Young Onset Parkinson Conferences: A First-Ever Collaboration

Release date: 3/13/2009

YOUNG ONSET PARKINSON CONFERENCES: A FIRST-EVER COLLABORATION

The American Parkinson Disease Association (APDA) and the National Parkinson Foundation (NPF) Announce Plans to Co-Sponsor a Series of Young Onset Parkinson Conferences; First to be held in Dallas, Texas, October 2009

Miami, FL—March 13, 2009—The American Parkinson Disease Association’s (APDA) National Young Onset Center and the National Parkinson Foundation’s (NPF) Young Onset Parkinson Network announced their first joint collaboration today. APDA and NPF will co-sponsor a series of conferences for those living with young-onset Parkinson’s disease and their caregivers. The first conference will be held in Dallas, Texas on October 23-24, 2009, with three additional programs in other parts of the country slated for the following year.

“We are pleased to be partnering with APDA to help people with young-onset Parkinson’s disease nationwide. Our goal is to leverage the strong networks of both organizations to offer the high-quality educational and networking experience that is so critical for people who will live decades with the disease,” said Joyce Oberdorf, NPF President and CEO.  Ms. Oberdorf noted that the regional series builds on the success of NPF’s highly regarded national Young-Onset Parkinson Network conference, while recognizing that in the current economic environment, travel to a single national event is difficult for many people and their families.

According to researchers, between five and 10 percent of Parkinson’s patients are diagnosed under the age of 40; although recent clinical studies show that as many as 12 percent of patients report that their symptoms began in their 40’s.  Young-onset patients will face a greater range of issues than more typical older idiopathic PD patients, including loss of employment, managing finances and concerns of young families as well as the social isolation many feel is their greatest burden.  Since they will live decades with the disease, and may suffer more severe treatment-related motor complications, early and intentional management is crucial to maintaining quality of life.

“APDA has been providing services dedicated to the particular challenges of young people diagnosed with PD for almost two decades through an Information & Referral Center and for the past two years by the country’s only national center,” said Joel Gerstel, APDA Executive Director. “We have sponsored regional family retreats for young patients on the West and Gulf coasts, and welcome this opportunity to join our expertise with NPF to provide even greater service to a larger number of people.” 

Entitled, “Choices and Connections,” the one-day program also includes a live webcast to extend its audience reach to as many patients as possible.   A full download of the program will also be available after the conference through both the APDA and NPF web sites.

Each program in the series is intended to combine the latest information about the science of the disease and medical updates, with panel discussions of  work/disability issues, managing stress and relationships, as well as how to deal with the strains of being a caregiver. In addition, each session will offer networking opportunities as well as optional activities such as massages and exercise classes.

Both APDA and NPF have made the decision to keep registration fees as low as possible, $30 per person, so that price will not be a barrier to attendance.

The fee includes all conference materials as well as a welcome reception, a continental breakfast and lunch. Interested participants will be able to register online at the APDA Young Onset Center’s web site www.youngparkinsons.org, or at the NPF web site www.parkinson.org.

About APDA

The American Parkinson Disease Association, founded in 1961 to “ease the burden and find the cure” for Parkinson’s disease, is the country’s largest grassroots organization serving the Parkinson’s community, operating through a national network of 53 chapters, 63 Information and Referral centers and approximately 1,000 support groups. APDA focuses on funding research, patient/caregiver support, education and raising public awareness about the disease. Additional information is available at 800-223-2732 or visit www.apdaparkinson.org.

The APDA National Young Onset Center provides young people with PD, their families and their health care providers with the most relevant and timely education, networking and wellness information. For more information, visit www.youngparkinsons.org, or call 877-223-3801.

About NPF

Founded in 1957 and headquartered in Miami, the National Parkinson Foundation has an extensive grassroots network of centers, chapters and support groups in the U.S., Canada, and internationally. Since 1984, NPF has invested over $140 million in disease-related programs and is committed to increasing the quality of care for Parkinson’s patients through research, education and outreach. For more information, visit www.parkinson.org, or call 800-327-4545.

Click here for the NPF’s 2008 Young-Onset Parkinson Network (YOPN) Conference webcast.

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