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Around & About the Community

PDF Mourns Former Board Member Earl Ubell, 1926 – 2007

The Parkinson’s Disease Foundation (PDF) observes with sadness and fond memories the passing of Earl Ubell, a former member of its Board of Directors, on May 29. The cause was complications related to Parkinson’s disease.

Mr. Ubell, a resident of Hackensack, New Jersey, served on the PDF Board from 1996 to 2006. One of America’s most respected science and health journalists, Earl began his career in the mid-1950s as a reporter and editor with the New York Herald Tribune. When the Tribune closed in the 1960s, he continued with a television career that included more than 25 years on the air with WCBS and a post at WNBC as director of the evening news. During this period, he virtually invented the role of the on-air reporter on scientific and medical topics. In later years, Mr. Ubell served as a health editor of the nationally distributed Parade magazine.

As a person who lived with Parkinson’s disease for more than 10 years, Mr. Ubell brought to the Board a strong personal conviction and determination to fund the most promising PD research. He also gave valuable assistance in framing and disseminating news of Parkinson’s disease science and research developments — including helping PDF staff to stage several science news seminars in the late 1990s.

Mr. Ubell is survived by his wife, Shirley, his children, Lori and Michael, three grandchildren and four great-grandchildren. PDF is deeply grateful for his dedicated service and for the memory of a good, wise and gentle friend.

One Woman, One Mission: PDF Volunteer Spreads the Word on Clinical Trials

It seems that no task is too big for her to handle. A last-minute invitation to travel from her hometown of Phoenix to Boston to speak to a group of people with Parkinson’s about her personal experiences with clinical trials? No problem. A request from the Parkinson’s Disease Foundation to serve as a patient advisor for a high-level roundtable on increasing participation in clinical trials? She’s on it. An opportunity to spend the afternoon speaking with a reporter about her commitment to telling others of the wonderful gift one can make to the Parkinson’s community by participating in trials? Check. It is all in a day’s work for PDF’s impassioned volunteer, Jean Burns.

Jean, a person living with Parkinson’s for more than four years, has turned the job of telling others about clinical trials, and encouraging them to consider participating as she has, into a noble cause. By sharing her story of why she chose to become a trial participant, and what she learned from the experience, Jean is able to connect with people who want to learn more about clinical research and possibly get involved themselves.

In the words of Diane Simmons, Executive Director of Center for Information and Study of Clinical Research Participation (CISCRP) and the organizer of the awareness symposiums in Dallas and Boston where Jean served as a panelist and staffed the PDtrials exhibit table (see photo), “Jean spoke from the heart… which only moved the audience to be more invested and more appreciative of those who participate in clinical trials. I value her intelligence, her gumption and her commitment to educating the public. She is a wonderful representative for PDF!”

We could not have said it better ourselves — thank you Jean!

For more information on participating in a Parkinson’s clinical trial, contact the PDtrials campaign, an initiative led by the Parkinson’s Disease Foundation in collaboration with the major Parkinson’s patient voluntary groups to accelerate the development of new treatments for the disease. Visit www.PDtrials.org, email info@PDtrials.org or call (800) 801-9484.

PDF Now Offers Materials in Spanish!

In recognition of the growing Spanish-speaking population in the US, the Parkinson’s Disease Foundation (PDF) is proud to announce the addition of several Spanish language publications to our portfolio of patient education materials. These publications include a compilation of frequently-asked questions, La Enfermedad de Parkinson: Preguntas y Respuestas, which answers questions on Parkinson’s disease from symptoms to treatments to quality of life issues (this publication is also available in English). The production and distribution of this educational booklet has been made possible by an unrestricted educational grant from Novartis Pharmaceuticals.

To add to the stock of Spanish resources, PDF has also developed a fact sheet series, written by both medical experts and people living with Parkinson’s. The topics covered include general facts about Parkinson’s, deep brain stimulation, working with PD and much more. To view these fact sheets, please visit www.pdf.org/en/factsheets.

If you would like to order your copy of La Enfermedad de Parkinson: Preguntas y Respuestas, or request print copies of our Spanish fact sheets, please call PDF’s Parkinson’s Information Service (PINS) toll-free at (800) 457-6676 or email info@pdf.org.