Join us on Saturday, April 10th for the annual Living Well with Parkinson’s Disease Spring Conference sponsored by the NJ APDA Parkinson’s Information & Referral Center and the NJ Chapter APDA. The conference will be held in Somerset, NJ and promises to be an informative day. Helaine Isaacs, PUW Event Director will attend and looks forward to meeting you there. Click here to register.
Helaine Isaacs, PUW Event Director and Amy Comstock Rick, PAN CEO
I attended the Parkinson’s Action Network’s 16th Annual Research and Public Policy Forum on February 17th at the Newseum in Washington, D.C. It was a wonderful opportunity to learn from and with other Parkinson’s disease advocates.
This was the first year that the Forum was delivered via webcast. In addition to 100 people attending in Washington, over 1,500 viewed the program via the webcast.
The morning included a panel focused on the need for Parkinson’s disease data, an explanation of the National MS and Parkinson’s Disease Registries Act bills that are currently in the House and Senate, and PAN’s role in encouraging individuals to serve as advocates for people with Parkinson’s and specifically on behalf of this legislation. If you haven’t already done so, click here to contact your representatives about H.R. 1428 and S. 1273.
The keynote speaker was Dr. Francis Collins, Director, National Institutes of Health. He spoke about creating a bridge between basic science discoveries and new and more effective treatments. It is estimated that NIH will spend $170 million in research on Parkinson’s disease in 2011. NIH is attempting to push innovative projects forward and then involve pharmaceutical firms in developing the potential drugs.
Current research findings were presented in the afternoon as well as more information on PAN’s role as an advocacy organization. Colonel Karl Friedl, Ph.D. has been involved with Parkinson’s disease research conducted by The Department of Defense for the past twelve years. Over 80,000 veterans have Parkinson’s disease and the Department of Defense is a major source of PD research. Thanks to the work of Parkinson’s advocates, over $25 million has been spent on research by this program in 2010. Dr. Michael Schwarzschild of Harvard Medical School and Massachusetts General Hospital presented his research on caffeine and urate as it relates to risk for PD and progression of the disease.
It was an inspiring day. The PAN staff, state coordinators and volunteers are the ones that keep Parkinson’s disease on the radar screen of our representatives and the funders of research. To view an entertaining view of PD advocacy, click here for a video made by PAN representatives in Michigan.
Good news! The Parkinson’s Unity Walk has reserved a block of rooms at the New York Hilton located at 1335 Avenue of the Americas between 53rd and 54th Streets. The room rate is $189 plus tax for a room with a king or two double beds. This rate will remain in effect until March 24, 2010. To make a reservation, call 1-800-HILTONS and make sure to mention you are part of the Parkinson’s Unity Walk room block. We look forward to seeing you at the Walk.
Subject: Raise money for Parkinson’s Unity Walk When You Shop Online
Raising money for Parkinson’ Unity Walk just got easier. If you’re shopping on amazon.com, start on our website and click on amazon’s link on the bottom of our home page. Amazon will track all purchases that were originated on our website and contribute a percentage of those sales to PUW.
If you have a Facebook account, you can shop for a cause on www.causes.com/shopping. Shop online at over 1,500 participating stores and a percentage of your purchases automatically goes to the charity of your choice.
Happy shopping!
Congratulations to Monnie Lindsay, winner of the 2010 Alan Bonander Humanitarian Award
The Alan Bonander Humanitarian Award winner is nominated and voted on by a committee. It is awarded to an individual in recognition of their exemplary contribution to the Parkinson’s community.
The Alan Bonander Humanitarian Award will be presented to Monnie Lindsay at the 16th Parkinson’s Unity Walk in Central Park.
In November 1993, Monnie Lindsay was diagnosed with Early Onset Parkinson’s disease at the age of 38. Trained as a lawyer, Monnie has had a passion for the intersection of law and policy, particularly as it relates to health care. Although Parkinson’s disease has taken many things from her, it has given her many gifts as well—one being to allow her to follow that passion for policy. In her work for the Parkinson’s Action Network (PAN), she tells people that “when you become an advocate, you cease being a victim.”
To learn more about Monnie click here.
No need to wait for the printed brochure to start your fundraising efforts. Here are some ideas you can get started with now:
Send an email to your friends and family including the link to your participant home page so they can donate straight from the email you send them. There is language describing the Walk in the “One Step Closer” Guide. While you may want to refer to the language used in the Guide, we encourage you to personalize your communication. This Walk is personal for so many of you and that is what is so compelling.
If your friends and family want to donate off-line, print out the General Donation Form found at the bottom of the Donation page.
You can print the brochure from the home page on our website and make copies if you want to use it right now.
Many of you are organizing great events in your local communities – concerts, walks, bike rides, etc. Some have been going on for many years; others are creating these events for the first time. It’s exciting to see the energy you are all bringing to these events! We are available to help you think about publicity and promotion of your event. Feel free to call our office to discuss your good ideas.
Best of luck with your fundraising efforts!
You can find the brochure on our home page. Many of you have already sent in your brochure requests. If you haven’t done this yet and want us to send you brochures, just send us an email at info@unitywalk.org with your name, mailing address and the number of brochures requested. We will make sure they are sent to you as soon as they are available. Be creative about how you can distribute them!
We appreciate your support of the PUW!
Margot Zobel, the founder of the Parkinson’s Unity Walk, passed away on January 29th, 2010. Some might say she lost her long and difficult battle with Parkinson’s, but her valiant effort to improve the lives of others who suffer with PD met with unquestioned triumph thousands of times over.
Margot’s life’s work stands as a testament to the power of one person to inspire others to action. In her quiet and dignified way she planted a seed in New York City that helped galvanize a diverse group of individuals with a shared illness into a vital, inclusive community around the world.
The Parkinson’s Unity Walk has become a shining example of what grass roots involvement can do to improve visibility, expand research and restore quality of life to millions who once felt powerless. We are indebted to Margot Zobel for her vision, strength and unwavering commitment in the face of a relentless adversary, Parkinson’s disease.
In lieu of flowers, the family requests that donations be made to the Parkinson’s Unity Walk in memory of Margot. The family will hold a private service for Margot at a later date.
We hope you all enjoyed the holidays with family and friends and are staying warm during these winter months. While the temperature is frigid today in New York, we are looking forward to a sunny and warm spring day for the 16th annual Parkinson’s Unity Walk scheduled for April 24, 2010.
For those of you who are traveling a distance to come to the Walk and need a hotel or those who are feeling adventurous and want to spend a night or two in the city, we have set aside a block of hotel rooms at the Marriott Courtyard located at 3 East 40th Street between Madison and 5th Avenues. To make a reservation, call Marriott at 212-447-1500 or 888 236-2427 and let them know you are with the Parkinson’s Unity Walk. The reference # is 1ZN-QB1Y. The rate is $189 per night for a room with single or double beds and is available on Friday and Saturday nights, April 23rd and 24th. We reserved a specific number of rooms at this rate and availability is on a first-come, first-served basis. The cut off date for this rate is March 26, 2010.
If you want to check out other hotels, www.tripadvisor.com is a good website that provides comparisons of rates for a variety of web-based hotel reservation services as well as reviews of the hotels.
Feel free to email or call me if you have any questions or we can be of help in any way.
Helaine Isaacs
Event Director
Parkinson’s Unity Walk
866-PUW-WALK (866-789-9255)
609-688-0870
hisaacs@unitywalk.org
I am writing with good news! We received confirmation for the date of Parkinson’s Unity Walk in Central Park. Mark April 24, 2010 on your calendars! We are delighted that we received the date we requested and are hoping for another sunny Saturday in Central Park. The date is now on our website and the brochures are being printed. You can request brochures by contacting our office 866-789-9255 (866-PUW-WALK) or 609-688-0020, emailing us at info@unitywalk.org or clicking on our website www.unitywalk.org.
We have more good news to share. Helaine Isaacs joined our staff as Event Director on December 7th. She has extensive experience in volunteer and event management. We are confident Helaine will be a wonderful addition to our team. She brings a passion for working with volunteers in support of a worthwhile cause. For more details, check the link on our website http://www.unitywalk.org/news.php?ID=104.
Feel free to get in touch with Helaine at the number above or email her at hisaacs@unity.org. She is available to support all participants in the Walk. As always, we appreciate all you do for PUW and look forward to continuing to work together towards our common goal of finding a cure for Parkinson’s disease.
Warm wishes for a wonderful holiday season to you and yours.
PUW Staff
