Published on March 5, 2014
NPFWNY January February March 2014 Newsletter TABLE OF CONTENTS Sip the Night Fantastic 9th Annual Wine Tasting April 25, 2014 Symposium 2014 Pg. 2 Golf Tournament Pg. 2 Lawsuit Expands Coverage Pg. 3 Buttoning Shirts a Snap Pg. 3 Walking Classes Offered Again Pg. 5 David Wolf to the Dogs Pg. 5 Valentine’s Dance Pg. 6 Newsletters by Mail Pg. 6 Our Mission is to improve the quality of life for the Parkinson’s community throughout Western New York. Edition 4 vol. 1 Delicious wines, craft beer, fantastic foods and great people – all of the ingredients needed for a marvelous evening. Please join us for a festive night that has become one of our most anticipated events each and every year, and those lucky enough will go home with a wonderful reminder of the evening. An array of amazing items will fill the courtyard at the Millenium Hotel, all of which will be available through both silent and ticket auctions. There will be raffles for great gifts as well. Details for the event are still being finalized, but save the date and spread the word to your friends and family. This is night that you won’t want to miss. Check our website for updates. New ED for Your PD Group We are extremely excited to announce that Valerie E. Pillo has been hired as the first Executive Director for NPFWNY. We found Valerie through an extensive search process, and she convinced us of her talents and her vision through multiple interviews. Valerie brings to the post an awareness of Western New York - its needs, its demands and its tight-knit communities. Valerie will help shape the future of NPFWNY, as we look to more effectively address the needs of our PD community. Please join us in welcoming her.
Symposium 2014 As we bundle up against this chilly, snowy winter, preparations are already being made for the 15th annual Symposium that is scheduled for what we expect will be a warm and sunny day in May. If you’ve never attended the Symposium, it is a wonderful experience that benefits anyone touched by PD. Parkinson’s patients, families and caregivers can all be accommodated. Over the years, thousands of members of the Western New York Parkinson’s community have benefited from the Symposium. And it is FREE! The Carl Jamele Memorial/JJ’s Open The 22nd annual Carl Jamele Memorial/JJ’s Open is coming in June. This event has become a significant fundraising event with proceeds going to benefit NPFWNY. Last year’s rains made for a soggy day, but we are anticipating wonderful weather for the 2014 tournament. Golfers can sign up as single players, or in groups of 2,3,4 or more. There are beverages available on the course, lunch and dinner are included, and everyone goes home with a great item from our amazing prize table. This really is a golfing experience that you don’t want to miss! Excitement is high for this year’s Symposium as our newly hired Executive Director, Valerie E. Pillo, will be addressing the audience. This will be the perfect opportunity to meet Valerie and to learn her vision for directing NPFWNY into the future. At this time, the list of medical professionals speaking includes Aldofo Ramierez, a doctor from Albany, New York; Jan Feng, PhD, who will present information on his research into PD undertaken at the University at Buffalo; and Robert Plunkett, MD, who will offer his expertise on DBS. Shifting to the more immediate and personal, John Baumann, a PD patient, will present “Reclaiming Positive Perspective by Embracing Adversity,” and his wife, Bernadette, will offer advice to caregivers. Lunch will be included for all who attend, and a Q & A session will follow the presentations so that anyone’s concerns can be addressed. This truly is an informative, fortifying and energizing experience for all involved. Registration is free, but seats are limited. Be sure to reserve your places today. May 17, 2014 Millenium Airport Hotel 2040 Walden Ave, Cheektowaga, NY 9 AM – 1:30 PM For Reservations Call (716) 449-3795 Or “Contact Us” at www.npfwny.org Chestnut Hill Country Club 1330 Broadway Darien Center, NY June 12, 2014 10 AM Shotgun Start $125 per golfer Please join us this year for a great day of fun, camaraderie, and support for the local Parkinson’s community. Maybe a thoughtful donation is more your game. Either way, please feel free to call or send a note. Chris Jamele 716 860-2354 / firstname.lastname@example.org Casa di Pizza (Chris or Joe Jacobbi) 716 886-8533
Lawsuit Expands Coverage for PD Patients and Others Are Buttons the Undoing of Your Favorite Shirts? By: Chris Jamele By: Chris Jamele A class action lawsuit, successfully filed against the Have you found yourself getting ready for work, that great night out, or simply a day lounging around the house, but buttoning your shirt is frustrating you and your progress? Well, a caregiver has found a creative solution to getting past this hurdle. Maura Horton has sewn magnets into the placket of her husband’s shirts, making it easier for him to get dressed. Center for Medicare and Medicaid Services (CMS), will extend coverage for services required by patients with chronic degenerative diseases, such as Parkinson’s Disease. According to a report from the Parkinson’s Action Network (PAN), the suit struck at what had been considered discriminatory actions against patients who suffer from such illnesses as PD, Alzheimer’s and others. The focus of the suit was a criterion in the requirements for health coverage that was termed the “Improvement Standard.” As described by PAN, the standard “required Medicare beneficiaries to show improvement to continue physical, occupational, and speech language therapy services. For a degenerative disease like Parkinson’s, therapy is not a cure, but it is a treatment option that can improve the quality of life and help maintain independence.” The suit was settled in January of 2103 but gave CMS until January 7th of this year to incorporate the legal changes into their policy manual. The action also requires that CMS establish a national educational campaign to ensure that all representatives who make decisions regarding Medicare coverage are aware of the changes and are informed as to how to incorporate these new guidelines in their assessments. Anyone wishing to review the changes implemented by CMS can do so by visiting: http://www.cms.gov/Outreach-andEducation/Medicare-Learning-NetworkMLN/MLNMattersArticles/Downloads/MM8458.pdf The report issued by the Parkinson’s Action Network can be seen at their website: www.parkinsonsaction.org Model wearing a MagnaReady shirt The magnets don’t take the place of buttons, per say. The buttons remain on the shirts, but they simply act as decorations. The outward appearance makes it looks as though the buttons serve their intended purpose, but behind them are magnets that are keeping Don Horton’s shirts together. This creative solution makes it far easier for Don to get dressed and to look stylish all while allowing him to continue wearing his favorite clothes. For those who are handy with a sewing machine, reworking shirts can be done at home. If this is not an option, Horton has established her own business, selling a line of dress shirts that are already equipped with magnets. Her company is called MagnaReady, and there are You Tube videos showing how the shirts work. Horton’s website is www.magnaready.com
Supreme Court Protects Provenience of Human Genes By: Chris Jamele The Supreme Court was unanimous in its June decision preventing firms from patenting human genes. This outcome should open the door to greater genetic research and, in some cases, less expensive medical testing for patients. Board of Directors NPFWNY Executive Director Valerie E. Pillo President Robert Plunkett, MD University at Buffalo Neurosurgery Vice President Victoria Glamuzina Owner/Operator Georgetown Liquors Myriad Genetics filed the case in question. The firm held patents on a pair of genes isolated in their labs. Studies showed that these genes were connected with hereditary breast and ovarian cancers. Based upon research using these genes, Myriad devised testing that indicates whether or not a patient carries the genes, potentially foretelling the presence of cancer in that patient. Because of the proprietary nature of the patents, the testing was expensive, costing as much as $3000 per test. The Supreme Court argued, in a decision written by Clarence Thomas, that human genes are not creations that result from the efforts and expertise of a scientific laboratory. Even though isolating a gene is an incredible accomplishment, the Court argued that, in these cases, the lab had not created something new, but simply focused on genes that were still a part of nature. What appears in nature cannot be patented, according to the decision. VP of Strategic Planning Gary Kurdziel, BA Northeast Manager Medtronic, MBA Candidate Treasurer David Lever Supervising Senior Accountant, Tronconi Segarra & Associates LLP Secretary Jennifer Jennings, DNP, MS, APRN, FNP-BC Assistant Professor, Georgetown University School of Nursing and Health Sutdies Director of Patient Services Patricia Weigel, RN Clinical Nurse Coordinator, Deep Brain Stimulation, University at Buffalo Comprehensive Movement Disorders Center General Counsel/Legal Advisor Harry J. Forrest, Esq. Attorney with Gross, Shuman, Brizdle & Gilfillan, P.C What can be patented are synthetic or manmade genes. The Court drew a clear distinction between natural genes and synthetic genes, which are created in a lab. Results stemming from the research and testing involving these synthetic genes can be registered as the exclusive property of the laboratory. What does this mean for Parkinson’s patients? Well, nothing immediately. However, with the doors open for numerous labs to pursue research on human genes and with market forces able to keep medical testing costs down for patients, this could bode very well as progress is made in the research toward treatment and a possible cure for PD. Information for this article was taken from “Justices, 9-0, Bar Patenting Human Genes” in The New York Times. http://www.nytimes.com/2013/06/14/us/supreme-court-rules-human-genesmay-not-be-patented.html Director of Programming Michele Youakim, Ph.D. Clinical Assistant Professor, Department of Rehabilitation Services, University at Buffalo Director of Fundraising Mark Burkard, RN University at Buffalo Neurosurgery Director of Communications Christopher Jamele Jamele Freelance Services Director of Volunteer/Outreach Services Susan Nichter, RPA-C Buffalo Medical Group
Therapy and Guide Dogs Walking Class to Begin Again By: David J. Wolf A few weeks ago, the Southtowns Support Group had a special visitor, Popeye, a therapy dog who is a pit bull and American bulldog mix. After being introduced, Popeye came around and made friends with everyone in the room. If you think that the presence of a Pit Bull would frighten you, that concern fades quickly. Popeye, it turns out, is a professional 180 pound nuzzling machine who was, himself, rescued and adopted by his trainer. That night he made sure that he stopped by each person and waited calmly to be petted or scratched. No one was exempted from his attentions. One of the most popular exercise classes available to the PD community is starting up again. Tiffany Regdos, PT, DPT, runs the Walking Class at UB. She is also a coach with the University at Buffalo track team. Tiffany can be reached via e-mail: email@example.com Details: • Day/Time: Every Tuesday from 4 to 5pm starting January 21st. • Where: University at Buffalo North Campus Alumni Arena. Meet at the main gym (basketball arena) • ! Parking: Parking is free after 3pm. Best place to park is in the back of alumni arena (by the football field). There is handicap parking in the lot located right by the door of alumni arena. • Cost: The cost to use the jogging track is $5/month. This allows you to use the jogging track anytime you want! Also if you do not have a metronome then the cost is $10 to buy one. ! A pit bull and American bulldog mix Popeye’s trainer explained the difference between a therapy dog and a service or guide dog. The main difference between the two is a legal distinction governing where each is allowed to go. A service dog is permitted to go with his trainer or partner anywhere, without restriction. The ADA (Americans for Disabilities Act) states that service dogs cannot be denied entrance wherever their partners go, including grocery stores, hospitals, classrooms or offices. And, in the case of airplanes, no additional fee may be charged for their passage. For all intents and purposes, the two are legally considered a single entity. Therapy dogs can be the same as a service dog but may be restricted from certain venues. While a service dog provides a single person with a full time companion and helper, a therapy dog generally provides their unconditional love and comfort to a larger group of people. A therapy dog may come and visit several places regularly, with or without being a full time companion. Therapy dogs have been used for disaster and stress relief in hospitals (Children's or General) as well as programs at schools, where troubled or shy children read to the dogs (Children Reading to Dogs or Tail Waggin' Tutors). The use of therapy dogs has expanded to include assisted living facilities or nursing homes and shelters. They are also welcomed as home visitors for shut-ins and have been well received by hospice. Anywhere there is need of love, comfort, a cold nose or just a good scratch, you can find therapy dogs in action. “Aw Popeye, you’re my hero!” For more information on therapy and service dogs, go to www.tdi-dog.org What the class consists of: • Walking for 20-30 minutes with the use of a metronome. I will determine an appropriate walking pace for you your first day. The walking is self-motivated, and you can walk as long as you like, taking breaks whenever needed. Family members/friends are always welcome to participate. • After everyone has finished walking, I direct the group in balance and stretching exercises for 1520 minutes. • Sign up: If you are new to the group and want to sign up all you have to do is show up any Tuesday at 4pm. I will show you where to sign up for the walking pass and introduce you to the use of the metronome. If you can, let me know ahead of time if you want to join so I can order enough metronomes. • The jogging track is open to students/faculty or members, so there will be other people jogging/walking on the track during the class. However, 4-4:30 tends to be less congested, and walkers have to stick to the inner lane. If members can only walk less than 100 feet at a time, there are areas on the track they can walk without people around them.
NPFWNY National Parkinson Foundation of WNY 3143A Walden Avenue Depew, NY 14043 www.NPFWNY.org (716) 449-3795 Newsletters by Mail? No Problem! The Western New York Chapter of the National Parkinson Foundation is creating a mailing list to ensure that everyone who wishes to read our Newsletter has the chance to do so. If you are not on our mailing list and would like to be, please send us an e-mail through our website, www.npfwny.org Don’t forget to check out our Facebook page and to “Like” us. Our page is titled “National Parkinson Foundation WNY.” We are always interested in what you have to say. Please feel free to drop us a line! Save the Date! Moving Day September 7, 2014 See you there!!! Non-Profit US Postage PAID Buffalo, NY Permit No. 4725 Valentine’s Dinner Dance This annual event always proves to be one of the most highly anticipated and most cherished evenings of the year. If you’ve never attended – or thought that your symptoms would prevent you from attending, think again – this night is for you! It is the perfect night for everyone to enjoy. We welcome all patients, their families and their caregivers. We hope to see you there! Sunday February 9, 6:00 – 8:30 PM Ilio DiPaolo’s Banquet Room (3785 South Park Ave., Blasdell, 14219) $10 per person (Dinner, soft drinks, cash bar) Reservations must be made by 2/3/2014 Call Betty Thurston 716 393-3134
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