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New Tool is Approved to Help with Diag-
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- Q: What is DaTscan Dr. Beck
- Do you want to know more about Parkinsons Order today from PDFs line of free print and video materials.
- Would You Like to PAIR Up for Parkinson’s Research
- Chock full o’Nuts coffee
- Chock full o‘Nuts Partners with PDF to Fight Parkinson’s The Story of PDF, Chock and William Black
- PDF N EWS
- Advisory Council Member Raises $37,000
- PDF is pleased to honor: Herbert Pardes, M.D.
- Tuesday, May 10, 2011 The Pierre Hotel New York, NY
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New Tool is Approved to Help with Diag- nosis of Parkinson’s The US Food and Drug Administration (FDA), on January 17, approved the use of DaTscan, a novel imaging technique that can be used to help diagnose Parkinson’s disease (PD) in its early stages. The tech- nique, which combines the injection of an iodine-based radioactive chemical with an imaging process (known as “SPECT”) that detects and measures the presence of dopamine, has been used successfully in Europe for more than a decade. What is DaTscan and what does it mean for you? To find out, PDF News & Review recently posed some of your questions to our Director of Research Programs, James Beck, Ph.D.
DaTscan is an imaging technol- ogy that uses small amounts of a radioac- tive drug to help determine how much dopamine is available in a person’s brain. A machine similar to but smaller than an MRI machine, called a “single photon emission computed tomography ma- chine,” or SPECT scanner, measures the amount and location of the drug in the brain. N E W S & R E V I E W S P R I N G 2 011 www.pdf.org/science_news What Does it
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PA R K I N S O N ’ S D I S E AS E F OU N DAT I O N 9 N E W S & R E V I E W S P R I N G 2 011 The Advocate Report: Sue Dubman of Massachusetts What is one way to help accelerate the develop- ment of new therapies for Parkinson’s disease (PD)? As Robin Elliott, Executive Director of the Parkinson’s Disease Foundation (PDF) noted in the last issue of this newsletter, it is through “pairing” people with Parkinson’s — trained re- search advocates — with people in government, science and industry to improve the process that brings us new medicines. Over the past few years in News & Review, we have pro- filed several of the 100 individuals from 36 states who comprise PDF’s Parkinson’s Advocates in Research (PAIR) program. One welcome addition to this group of research advocates is Sue Dubman, of Boston, MA. For the first year after Ms. Dubman re- ceived her diagnosis of Parkinson’s in 2008, she said she “floated down the river of ‘de- nial!’” Yet it did not take her long to get involved with helping the Parkinson’s com- munity in a way that powerfully leverages her 15 years of profes- sional experience in government, health, information technology and clinical research. She works with or- ganizations such as the Clinical Data Standards Inter- change Consortium (CDSIC) on data standardization — that is, on finding ways to coordinate data collec- tion across research studies testing new therapies. Ms. Dubman saw an opportunity when she read about PDF’s three-day research advocacy training, the annual Clinical Research Learning Institute. As she describes it, “When I was at the National Cancer In- stitute, I worked with many patient advocates so I was already familiar with what they do and how impor- tant they are. As a person with Parkinson’s, I have a vested interest in wanting to see treatments to stop progression and improve quality of life for people liv- ing with Parkinson’s.” She participated in the training in October 2010. Today, just five months into her new role as a Parkin- son’s research advocate, she has already found several ways to impact data standardization for Parkinson’s. She says that the problem is that Parkinson’s re- searchers often collect and label data in different ways. For instance, one study will define its young onset PD participants as people younger than age 40, and an- other will say they should be defined as everyone under age 50. Down the road, there is no way to com- pare and share information across studies because the measurements are too different. Ms. Dubman is also working to solve this problem through her service with the Coalition Against Major Diseases (CAMD)- Critical Path Institute, a nonprofit institute which brings together industry and govern- ment agencies to im- prove the development of new therapies by streamlining data. She has also reviewed new data standards created by the National Insti- tute of Neurological Disorders and Stroke (NINDS) — a branch of the Na- tional Institutes of Health (NIH) that funds PD re- search — and provided her expert feedback on behalf of PDF and the Parkinson’s community. Why is this work important? As Ms. Dubman puts it, “Data standards could speed up innovation, by allowing scientists to focus on the bigger picture rather than administrative details. We all want new treat- ments more quickly, and this is one way to improve the process.” As she uses her combination of profes- sional expertise and personal dedication to the cause, so does she help increase the voice of people with Parkinson’s — exactly the aim of PAIR. Sue Dubman PDF’s Parkinson’s Advocates in Research (PAIR) program is a network of more than 100 research advocates from 36 states who work to bring educated consumer voices to important issues in Parkinson’s therapy development. This growing network is actively collaborating with scientists, government agencies and private industry to change the role that people with Parkinson’s play in the design and implementation of Parkinson’s research and programs. • If you are a person with PD who would like to learn more about becoming part of PAIR… • If would like to speak with PDF about partnering with a research advocate at your institution, clinical study or support group… Then call us at (800) 457-6676; email us at info@pdf.org; or visit us at www.pdf.org/pair. Would You Like to PAIR Up for Parkinson’s Research? 10 PA R K I N S O N ’ S D I S E AS E F OU N DAT I O N N E W S & R E V I E W S P R I N G 2 011 PDF founder William Black with his wife, Page Morton Black. The Parkinson’s Disease Founda- tion (PDF) is excited to announce a new partnership with Chock full o’Nuts, maker of the well-known “heavenly coffee” and founder of the restaurant chain. PDF and Chock full o’Nuts share a common history, having both been founded by the late William Black (see the PDF/Chock story below). Now, the two are joining forces to fight Parkinson’s dis- ease (PD), beginning with nationwide promo- tions to raise awareness around the country about the disease, the need to fund research for new treatments and a cure, and the availability of educational resources from PDF to help people manage their Parkinson’s. This partnership will begin just in time for Parkin- son’s Awareness Month this April and it is coming to a community near you. Where should you look to find it? • Check your Sunday circulars on the weekend of March 27 for a special coupon and advertisement pro- moting Parkinson’s Awareness Month. • Check out the Chock full o’Nuts coffee cans in your local grocery store. This spring, new cans will be fea- turing information about PDF’s mission to fight Parkinson’s disease. • If you live or work in New York City, or will be visiting the city, you may notice Chock full o’Nuts trucks pro- moting the fight against Parkinson’s and distributing free coffee. You may also visit Chock’s coffee shops, such as Chock 23 on West 23rd Street between Fifth and Sixth Avenues, to see cups and other items with in- formation inviting people to join the fight against PD. Robin Elliott, PDF’s Executive Director, said of the partnership, “PDF has been singularly committed to finding the cause(s) and a cure for Parkinson’s disease since that day back in 1957 when Mr. Black first found out that his close friend and associate had developed Parkinson’s, and realized to his amazement that there were no effective treatments for the condition. We are certain that Mr. Black would be happy to know that the two businesses he founded are now partnering to push forward progress toward these goals and we thank Chock full o’Nuts for its support.”
William Black opens his first Chock full o’Nuts Shop in New York City. He eventu- ally opens more than 40 shops and switches his focus from nuts to coffee, but keeps the original name. 1952-1961 Mr. Black begins dis- tributing Chock full o’Nuts brand of coffee in grocery stores.
Mr. Black’s controller and close friend was diagnosed with Parkinson’s. Mr. Black is appalled to learn that no truly effective therapy is available, nor is any basic research being conducted on the disease. 1983 Page Morton Black, Mr. Black’s widow and the well- known singer of the Chock full o’Nuts jingle, becomes Chairman of PDF. 2011 PDF partners with the coffee company founded by Mr. Black to raise awareness of Parkinson’s. PDF continues to fund a major research program at Columbia University and also supports re- search programs at Weill Cornell Medical Center, Rush University Medical Center and the projects of individual investigators and fellows around the world, as well as runs print and online educational programs and research advocacy initiatives. 1957 Mr. Black sets up PDF to es- tablish a research program aimed at finding an effective drug treatment for the dis- ease. He makes two major gifts: one to Columbia Univer- sity to help build the research laboratory with a floor dedi- cated to Parkinson’s research; the other to endow PDF.
PA R K I N S O N ’ S D I S E AS E F OU N DAT I O N 11 PDF N EWS N E W S & R E V I E W S P R I N G 2 011
Nearly 200 music lovers and oth- ers dedicated to the fight against Par - kinson's disease (PD) gathered for the 8th Annual Music for Parkinson's con- cert on December 5, at Rye Country Day School in Rye, NY. The event, or- ganized by Music for Parkinson's Re- search, raised $37,000 in net proceeds for the research programs of the Par - kinson's Disease Foundation (PDF). The afternoon featured perform- ances by several leading chamber music artists including John Stine, Gena Raps and the Attacca Quartet. After the concert, guests enjoyed a wine and cheese reception and chatted with the musicians. Music for Parkinson's was founded by three individuals, led by David Eger, Ph.D., who has worked with PDF for many years, in large part as an inaugural member of PDF's People with Parkinson's Advisory Council, a group that advises the foundation on its research, education and advocacy programs. Dr. Eger noted, “We were thrilled by the support from friends, family, community members and PDF staff and board members who came to- gether to help raise funds to find the cure for this disease.”
This award will be presented at PDF’s annual gala,
The Parkinson’s Disease Founda- tion (PDF) mourns the recent loss of two founding members of its People with Parkinson’s Advisory Council (PPAC), Lillian Snyder, of Wheaton, IL and Bruce Talbot, of Moretown, VT. PPAC was cre- ated to provide PDF with perspec- tives on research-funding priorities, community needs and ways to better serve people living with Parkinson's through education and advocacy pro- grams. Ms. Snyder and Mr. Talbot began their terms in 2006. Ms. Snyder was diagnosed with Parkinson’s in 1998. Among her vari- ous contributions to PDF, she was an advocate for educating others about the disease. She wrote articles on how to explain Parkinson's to grandchil- dren and tips for moving to a new home, and championed brain dona- tion. She was also a member of PDF’s Creativity and Parkinson’s Project and her painting, "The Birch Tree," was featured in PDF’s 2010 wall calendar. Mr. Talbot was diagnosed with Parkinson’s in 1994. He was best known as the enthusiastic captain of the PDF Pacers, at the annual Parkin- son’s Unity Walk in New York. Dedi- cated to helping those living with Parkinson’s navigate its challenges, he was a contributor to the PDF newslet- ter, authoring, “Making a Move with Parkinson’s,” in the Spring 2007 issue. Mr. Talbot was one of the PPAC members who lobbied PDF for the creation of PDF’s first Resource List. He touched PDF’s staff and board by creating a “procla- mation” thanking PDF for being the first organization to have an advi- sory board made up of people affected by PD. His book on his journey with chronic ill- ness, The Heart of the Matter, will be published posthumously. PDF Executive Director Robin El- liott noted, “Lillian was a true and beloved friend of PDF whose paintings and words brought hope to others. Bruce is remembered for the kindness, enthusiasm and grace that inspired everyone around him. We will cer- tainly miss both of these dear friends.” Bruce Talbot Lillian Snyder Yüklə 1,38 Mb. Dostları ilə paylaş:
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