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adiaz

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  1. The National Parkinson Foundation and 23andMe are partnering on a genetics research initiative and you can participate! All it takes is $25, a small saliva sample, and a willingness to participate in online surveys. The partnership between NPF and 23andMe will allow up to 10,000 people with Parkinson's to receive a reduced membership rate to the Personal Genome Service. The goal is to use the genetic information of those with Parkinson’s to enhance our understanding of the disease and accelerate new discoveries and therapeutic breakthroughs. What else can you learn from your genes? We encourage you to visit the 23andMe web site to learn more about their project. The reduced rate of $25 (reg. price: $399) is only for people who have been diagnosed by a physician, but we encourage non-patients to spread the word to people with PD. This discount is due to the generous support of Google co-founder Sergey Brin. If you are a person with Parkinson's disease and decide that you would like to participate in this innovative research project, fill out the online form to request a code to use to access the $25 price. To request a discount code visit: http://www.parkinson.org/23andMe For details on the project visit: http://www.23andme.com Parkinson's and Genes Just a few years ago, genes were thought to have little influence on Parkinson's disease. But now a growing number of Parkinson's-causing mutations are being discovered. We think we can learn even more with the help of 10,000 people willing to share their experience A New Kind of Research You can help revolutionize the way Parkinson's research is conducted. Parkinson's is a complex disease with both genetic and environmental components. By participating in this initiative, you'll be joining an unprecedented effort to understand how the two work and interact. You'll also see the progress of this research as it moves ahead.
  2. This forum is no longer available for new postings. However, you can still search the archived topics. If you are interested in contacting Kathrynne Holden, MS, RD, we encourage you to visit her very active Facebook page: Parkinson's -Chew on this
  3. Share Your Story with NPF: Are you living with Parkinson's disease? Are you a caregiver of someone living with Parkinson's disease? Are you a loved one of someone living with Parkinson's disease? If the answer is YES, you have a story to tell. Your story may be featured on the new NPF web site, launching in Fall of 2009. Go to www.parkinson.org/ShareYour Story
  4. Click here to register for our next free webinar: Practical Pointers: Caring for Someone with PD, taking place on Thursday, November 13 at 1:00 p.m. ET to learn effective strategies to make life easier for you and your loved one with Parkinson's.
  5. The National Parkinson Foundation Launches CareMAP: An Online Guide to Caring for Someone with Advanced Parkinson’s Disease Release date: 11/12/2014 — November is National Family Caregivers Month —MIAMI, November 12, 2014 — The National Parkinson Foundation (NPF) announced the launch of a new online guide, CareMAP, which provides practical suggestions for coping with the complex problems that arise as a result of advanced Parkinson’s disease (PD). “Caregivers often include a spouse or a partner juggling the demands of work, home and care for a loved one,” said Michael S. Okun, MD, NPF’s National Medical Director. “With the advanced stages of Parkinson’s, the strain on the caregiver can be substantial.” Using a dynamic format combining videos and articles, the CareMAP website, caremap.parkinson.org, explores the key elements of Parkinson’s care. Since the disease progress slowly, with caregivers gradually taking on more responsibilities over time, the site gives caregivers—family members, friends, volunteers or paid professionals—the tools and resources they need to successfully transition from one stage of caregiving to the next. “The biggest challenge for me as a caregiver has been switching from care partnering a little bit to really becoming full-time. In the last 15 years, I’ve learned that I had to give up a lot of things, and it wasn’t really a major challenge, it’s just what we needed to do,” said Lyle Lutz, who is providing home care to his wife, Lavon. The website is organized into six key areas: Home Care, Outside Help, Caring from Afar, Caring for You, End of Life and Resources. Visitors can explore the topics that are relevant to them at any particular time in their caregiving journey. “We have a motto: the right information at the right time,” said Rose Wichmann, PT, Manager of the Struthers Parkinson’s Center, an NPF Center of Excellence. “This website will allow caregivers to get answers quickly, without having to wait until the next doctor’s appointment in two or three months.” How-to videos offer practical tips and messages about responding to everyday challenges, such as helping someone get out of bed or get dressed. Interviews with caregivers showcase their unique stories about how the disease has affected them. A companion workbook will be available later this year to help family caregivers organize all the information they will both receive and generate over the course of their loved one’s Parkinson’s journey. The workbook will address caregiving questions and concerns from diagnosis through end-of-life care, making it a useful tool for people at any stage of caregiving. The CareMAP team had help from leading Parkinson’s specialists — Rose Wichmann and Joan Gardner, both from Struthers, and Michael Okun, MD, of the University of Florida — as well as people affected by Parkinson’s. This project was made possible by grants from Abbvie and ACADIA Pharmaceuticals.
  6. Annual Wellness Symposium and Young Onset Parkinson’s Conference June 15 -16 in Irvine, CA NPF is joining it’s Orange County Chapter (NPFOCC) and APDA to bring you a unique learning opportunity: NPFOCC Annual Wellness Symposium followed by the NPF/APDA Young Onset Parkinson Conference. These two events offer sessions for people of all ages who are living with Parkinson's, as well as an opportunity to network with peers from around the country. For more details and to register for the in-person event click here: http://parkinson.org/YOPC If you cannot make it to Orange County, California then join us on Saturday via Live Webcast ! For more details call 1-800-473-4636 (800-4PD-INFO). Help spread the word – Forward this email to a friend!
  7. "Caring with Courage and Compassion” Notes of Inspiration, Loneliness, Connection, and Love from a Parkinson’s Caregiver Parkinson Foundation of the National Capital Area, a Chapter of the National Parkinson Foundation, announces the release a new book focused on Caregiving for PD patients. Read the inspiring, honest and challenging story that Susan Hamburger takes us through in her twenty eight year journey she shared with her husband Stan after his diagnosis of Parkinson’s. For details on obtaining this book contact: 703-287-8729 or pfnca@parkinsonfoundation.org
  8. Share Your Story with NPF: Are you living with Parkinson's disease? Are you a caregiver of someone living with Parkinson's disease? Are you a loved one of someone living with Parkinson's disease? If the answer is YES, you have a story to tell. Your story may be featured on the new NPF web site, launching in Fall of 2009. Go to www.parkinson.org/ShareYour Story
  9. What is the exact cause of tremors in PD? Can they be decreased by strengthening the muscles in the effected body part?
  10. Young Onset Parkinson Conference March 12-13, 2010 – Webcast or live from Sacramento, California Participate in the second NPF/APDA Conference! Meet experts who will talk about care and quality of life issues specifically for people with young onset Parkinson’s disease. Can't make it to Sacramento, CA -Attend Live Webcast at no cost! With the webcast, you can listen to and interact with experts and people with young onset PD, all from your own home. Webcast registration information coming soon. The program is not strictly for younger people with PD, much of the information will pertain to people with PD of all ages. NOTE: For additional details or to register for the full conference in Sacramento go to http://www.parkinson.org/yopc Spread the word, forward this message!
  11. Young Onset Parkinson Conference March 12-13, 2010 – Webcast or live from Sacramento, California Participate in the second NPF/APDA Conference! Meet experts who will talk about care and quality of life issues specifically for people with young onset Parkinson’s disease. Can't make it to Sacramento, CA -Attend Live Webcast for FREE! With the webcast, you can listen to and interact with experts and people with young onset PD, all from your own home. Webcast registration information coming soon. The program is not strictly for younger people with PD, much of the information will pertain to people with PD of all ages. NOTE: For additional details or to register for the full conference in Sacramento go to http://www.parkinson.org/yopc Spread the word, forward this message!
  12. View the archived webcast from the Young Onset Parkinson Conference March 13, 2010 – Sacramento, California We have posted the video of the event for you to access online. To view the archive, simply click on the link below and follow the instructions that will appear in your browser: View YOPC Sacramento webcast
  13. The National Parkinson Foundation and 23andMe are partnering on a genetics research initiative and you can participate! All it takes is $25, a small saliva sample, and a willingness to participate in online surveys. The partnership between NPF and 23andMe will allow up to 10,000 people with Parkinson's to receive a reduced membership rate to the Personal Genome Service. The goal is to use the genetic information of those with Parkinson’s to enhance our understanding of the disease and accelerate new discoveries and therapeutic breakthroughs. What else can you learn from your genes? We encourage you to visit the 23andMe web site to learn more about their project. The reduced rate of $25 (reg. price: $399) is only for people who have been diagnosed by a physician, but we encourage non-patients to spread the word to people with PD. This discount is due to the generous support of Google co-founder Sergey Brin. If you are a person with Parkinson's disease and decide that you would like to participate in this innovative research project, fill out the online form to request a code to use to access the $25 price. To request a discount code visit: http://www.parkinson.org/23andMe For details on the project visit: http://www.23andme.com Parkinson's and Genes Just a few years ago, genes were thought to have little influence on Parkinson's disease. But now a growing number of Parkinson's-causing mutations are being discovered. We think we can learn even more with the help of 10,000 people willing to share their experience A New Kind of Research You can help revolutionize the way Parkinson's research is conducted. Parkinson's is a complex disease with both genetic and environmental components. By participating in this initiative, you'll be joining an unprecedented effort to understand how the two work and interact. You'll also see the progress of this research as it moves ahead.
  14. Join Andrew Siderowf, MD, MSCE, Director of the NPF Center of Excellence at the University of Pennsylvania, for a free LIVE webinar on his work on Parkinson's Associated Risk Study (PARS): Wednesday, September 30, 2009, 1:00pm EDT Register for the PARS webinar Initial findings from this study were first presented at the Movement Disorder Society in Paris last June, and the project is on-going. This is the first time Dr. Siderowf will be talking with patients about this promising project that is helping researchers to diagnose Parkinson’s disease earlier so that neuroprotective therapies can be initiated sooner. Dr. Siderowf will be inviting participants to be a part of this important research. Webinar attendees will be able to ask questions live as well as meet a study participant. What is the PARS study? Dr. Siderowf is screening over 15,000 close relatives of people with PD. His goal is to evaluate these tests to see if with them he can detect early signs of Parkinson’s disease. The most promising test so far is the University of Pennsylvania Smell Identification Test (UPSIT), a test of the sense of smell. Changes in sensitivity to odors frequently occur prior to the onset of motor symptoms. All are welcome to attend this webinar! Dr. Siderowf is particularly interested in connecting with people with PD and also their children, parents, and siblings who are over 50 years old. You can also participate if you have a relative with young onset PD and you are close in age to when your relative developed symptoms (or older). If you know someone who meets these criteria, please forward this message to them!
  15. Link is fixed. Thank you! Go to www.parkinson.org/ShareYour Story
  16. Share Your Story with NPF: Are you living with Parkinson's disease? Are you a caregiver of someone living with Parkinson's disease? Are you a loved one of someone living with Parkinson's disease? If the answer is YES, you have a story to tell. Your story may be featured on the new NPF web site, launching in Fall of 2009. Go to www.parkinson.org/ShareYour Story
  17. The National Parkinson Foundation and 23andMe are partnering on a genetics research initiative and you can participate! All it takes is $25, a small saliva sample, and a willingness to participate in online surveys. The partnership between NPF and 23andMe will allow up to 10,000 people with Parkinson's to receive a reduced membership rate to the Personal Genome Service. The goal is to use the genetic information of those with Parkinson’s to enhance our understanding of the disease and accelerate new discoveries and therapeutic breakthroughs. What else can you learn from your genes? We encourage you to visit the 23andMe web site to learn more about their project. The reduced rate of $25 (reg. price: $399) is only for people who have been diagnosed by a physician, but we encourage non-patients to spread the word to people with PD. This discount is due to the generous support of Google co-founder Sergey Brin. If you are a person with Parkinson's disease and decide that you would like to participate in this innovative research project, fill out the online form to request a code to use to access the $25 price. To request a discount code visit: http://www.parkinson.org/23andMe For details on the project visit: http://www.23andme.com Parkinson's and Genes Just a few years ago, genes were thought to have little influence on Parkinson's disease. But now a growing number of Parkinson's-causing mutations are being discovered. We think we can learn even more with the help of 10,000 people willing to share their experience A New Kind of Research You can help revolutionize the way Parkinson's research is conducted. Parkinson's is a complex disease with both genetic and environmental components. By participating in this initiative, you'll be joining an unprecedented effort to understand how the two work and interact. You'll also see the progress of this research as it moves ahead.
  18. Hi Stitcher, See the latest announcement at the top of this Discussion Board. NPF has joined 23andMe as a partner in this recruiting effort, along with the Fox Foundation and the Parkinson Institue in Sunnyvale, a designated NPF Center of Excellence. You can also request the discount code for the $25 test kit by visiting http://www.parkinson.org/23andme Read a letter from the co-founders of 23andMe P.S. This forum is not moderated. NPF values the free flow of information and the collective power of all persons and organizations working to improve the well being of those living with PD. I was a casual visitor today as I wanted to be sure the 23andME announcement displayed properly, when I happened on your post. Regards, Adolfo Diaz Deputy Director of Programs National Parkinson Foundation
  19. 6th Annual Young-Onset Parkinson Network Conference August 7-9, 2008 Atlanta, GA REGISTER TODAY! Early Registration Fee: $79/pp* ends June 30th. *(includes Welcome Reception on Thursday, breakfast, lunch, dinner and entertainment on Friday, breakfast and lunch on Saturday) Scholarship Assistance available. Visit the NPF home page or click on the link below to view detailed YOPN Conference information: Program Highlights, Preliminary Agenda, List of Speakers, Artisan Booth Application, Faces of Parkinson Disease Project, and much more! http://www.parkinson.org/NETCOMMUNITY/Page.aspx?pid=565&srcid=201[/b]