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From The Co-founders of PLWP;
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Hi All,
We are very pleased with the collaborative role that PLWP has achieved with the scientific community. Research scientists and medical professionals are viewing PLWP as an important resource for patient input. This is due in part to your response to the recent Harris Poll regarding quality of life issues; to the response to the prior request of the NINDS for volunteers in the Baltimore area and to the visibility you the members are bringing to the Parkinson's community in general.
PLWP is being recognized among the major national Parkinson's organizations as a body of volunteering people with Parkinson's who want to contribute. A body that is educating themselves, supporting one another, creating more awareness and understanding of PD.
It is exciting to see the increased efforts in “The War Against Parkinson’s”. Our participation in last month's 5th Annual Meeting of the Udall Centers of Excellence for Parkinson’s Research gave us several opportunities for us to support the Udall Program. It was an honor to be invited to participate in that symposium as well as the Annual Rochester Parkinson’s Symposium sponsored by the University of Rochester and the Upper New York State Parkinson’s Group Patient in-put is critical for providing a better understanding of the disease, which ultimately brings us to better treatments and closer to finding a cure.
PLWP is being recognized in the Parkinson's community in general as people living with Parkinson's, united in their caring of and for others. From the newly diagnosed with their fears and quest for knowledge to the "old timer" who has had the disease for many years and growing weary of the challenge. From the chat room that shares, listens, laughs and sometimes cries to the up to the minute dissemination of information by our knowledgeable members.
We thank our dedicated members who work hard to raise funds to support the maintenance of PLWP and it’s programs. Programs that are developed because of a recognized need, such as the Benevolence Program that (when funds are available) helps our members in need to help themselves and The Cord blood Research program that allows mothers to donate their cord blood for neurological research. PLWP is about people! PLWP is about YOU! We believe we are in a position as an organization to make a difference in the Parkinson's arena. The following are some of the opportunities we are currently involved in:
1) Harris Interactive, WEMove and Amarin Pharmaceutical presenting the results of the survey YOU participated in, to the ANA (American Neurology Association) Conference in San Francisco on October 20. The results are to be presented at a press conference and later that week there will be a link to the audio of that event on the PLWP website. We have been privy to the results and we are excited how they substantiate the general consensus of the importance of the secondary, non-motor symptoms in the world of Parkinson's.
2) Working with the NINDS, fulfilling their need for strategically located participants while fulfilling the participant's need to contribute. Currently we have posted the need in New York City and Miami...there will be more. As the need arises, YOU will be notified by email. (Keep you email address current on our Yahoo group site at www.groups.yahoo.com/group/plwp2)
3) Working with the Parkinson's Disease Foundation, the Parkinson's Alliance and the National Institute of Health sponsoring a scientific symposium in Washington, DC on Depression and Parkinson’s. Some 30 plus researchers will come together and share their theories, their questions and their individual expertise. To our knowledge, this is a first.
4) PLWP already has a team created for the Parkinson's Unity Walk (see front page of website at www.plwp.org ) Definite plans such as hotel, etc. are as yet inconclusive but are in process. We will have the honor being on stage at this year's walk, sharing in the presentation of the 2004 Alan Bonander Humanitarian Award. Wouldn't it be wonderful to have a "sea of PLWP's" in the audience?
These are opportunities that have just recently been afforded PLWP. We believe our contribution as a unified body is just beginning. YOU ARE MAKING A DIFFERENCE...keep up the good work.
Together we make a difference,
Nan and Bren
