The APDA MA Chapter will be holding its 25th Annual Parkinson Walkathon on Sunday, June 5, 2011 at the Reebok International Headquarters in Canton, MA. Every year, the Walkathon raises funds to support crucial Parkinson’s disease research. 100% of the proceeds from this event are donated to research approved by the APDA Scientific Advisory Board to continue with the organization’s mission “To Ease the Burden – Find the Cure.”
We are pleased to announce the Fourth Annual Parkinson’s Disease Seminar for Healthcare Professionals at Boston University May 6 & 7, 2011. This unique course continues to provide a cutting-edge, evidenced-based update on the medical and rehabilitative management of patients with Parkinson’s disease (PD). Movement disorder experts from Boston University have partnered with the American Parkinson Disease Association (APDA) to bring the latest developments in the field to healthcare professionals invested in providing high quality care to people with PD. For 2011, we have brought back our excellent speakers from last year and invited some additional experts to participate.
Participants will be provided the tools to become resource clinicians in their practice settings in order to optimize the delivery of care to people with PD and their significant others.
Dr. Samuel Frank Interviewed on Cape and Island NPR Station WCAI about Parkinson’s Disease and the PPMI Research Study
On Monday, December 20th Dr. Samuel Frank, Neurologist with the Boston University Medical Campus Parkinson’s Disease and Movement Disorders Center and Principal Investigator in the PPMI (Parkinson’s Progression Markers Initiative) Trial, was interviewed by Mindy Todd on The Point, a radio show on WCAI (Cape and Islands NPR Station).
Dr. Frank spoke about the search for a biomarker for Parkinson’s disease. A biomarker is a substance or characteristic in our bodies that is associated with the presence of the disease.
To listen to Dr. Frank’s extensive interview, Click Here.
Boston University Medical Center Joins Parkinson’s Progression Markers Initiative (PPMI) As Official Study Site
— $40-million, five-year observational clinical study, sponsored by Michael J. Fox Foundation,
will seek biomarkers of Parkinson’s disease —
Boston, Massachusetts, October, 2010 — Boston University Medical Center announced that it is one of 18 official study sites for the Parkinson’s Progression Markers Initiative (PPMI), a landmark observational clinical study sponsored by The Michael J. Fox Foundation, which will use a combination of advanced imaging, biologics sampling and behavioral assessments to identify biomarkers of Parkinson’s disease progression. Enrollment of 20 patients and 10 controls at Boston University Medical Center is expected to begin in June/Summer and will continue for approximately two years.
“PPMI holds potential not only to accelerate the development of breakthrough Parkinson’s treatments for the future, but also to improve diagnosis and treatment of today’s generation of PD patients,” said Dr. Samuel Frank. “Boston University Medical Center has been at the forefront of Parkinson’s disease research for years in Boston, Massachusetts. It is deeply meaningful to have been selected as a PPMI site and to have our commitment to speeding Parkinson’s solutions recognized.”
Said Michael J. Fox: “This is an ambitious undertaking, no doubt. But nothing worth having comes easily. Everything we’ve learned up to now, the partnerships we’ve worked to forge, the results of research we’ve funded — it’s all put us in position to launch this effort. We’re ready to roll up our sleeves and, hopefully, get this done.”
Biomarkers: Mission-critical for Parkinson’s Drug Development
A biomarker could be any objectively measurable physical characteristic associated with the presence of disease (diagnostic or risk marker) or any characteristic that changes over time in a way that can be tied to the progression of disease (progression marker).
“There is no doubt that finding a biomarker is critical to the development of next-generation therapies, and that the lack of this tool is among the most critical issues facing the PD research field,” said Katie Hood, CEO of The Michael J. Fox Foundation. “MJFF has funded biomarker discovery efforts for years. Now we are poised for a concerted, unified effort that will take these discoveries to the next level.”
The lack of a PD biomarker impedes PD diagnosis and treatment, and also critically stalls the development of improved therapies, particularly therapies to slow or stop the progression of PD, something no currently available treatment can do. Clinical trials of new, potentially disease-modifying Parkinson’s treatments are at risk of yielding inconclusive results, because there is no way to measure the effects of those treatments objectively.
About The Parkinson’s Progression Markers Initiative (PPMI)
PPMI, a groundbreaking study to find biomarkers of Parkinson’s disease, will be carried out over five years at 19 clinical sites in the United States and Europe. The study will enroll 400 de novo Parkinson’s patients (patients who are newly diagnosed and have not yet taken PD medication) and 200 healthy age-matched controls. Participants will undergo tests including motor, neuropsychiatric and cognitive examinations; brain imaging with DatSCAN and MRI; and blood, CSF, urine and DNA sampling. For information on enrolling in PPMI, please contact site coordinator Ray James, RN, BS at (617) 638-7745.
About The Michael J. Fox Foundation
The Michael J. Fox Foundation is dedicated to ensuring the development of better treatments, and ultimately a cure, for Parkinson’s disease through an aggressively funded research agenda. MJFF has funded over $175 million in research to date.
About Boston University Medical Center
Boston University Medical Center is a private, not-for-profit, academic medical center located in Boston’s historic South End. Boston Medical Center is the primary teaching affiliate for Boston University School of Medicine. Boston Medical Center emphasizes community-based care, with its mission to provide consistently accessible health services to all. The largest safety net hospital in New England, Boston Medical Center provides a full spectrum of pediatric and adult care services, from primary to family medicine to advanced specialty care. With the largest 24- hour Level I trauma center in New England.
For more information, please visit the link below:
Frontline Feedback: A Filmmaker and Patient’s Perspective – Presentation Video Available Online at BUniverse
On April 14, 2010 Frontline Producer David Iverson presented “Frontline Feedback: A Filmmaker and Patient’s Perspective” at Boston University College of Health & Rehabilitation Sciences: Sargent College . Please CLICK HERE to watch the video of this special presentation on BUniverse.
Faculty, students, scientists, clinicians, and staff from across Boston University met for a day long program to share information on the work that is being done in Parkinson’s disease. Dr’s Ben Wolozin and Marie Saint-Hilaire welcomed their colleagues, promising a day of sharing information from very exciting projects and collaborations ongoing.
Presentations included work being done in both the basic science and clinical areas. Faculty and students also had an opportunity to present recent posters describing their work. A special highlight of the day included a presentation by a physician with Parkinson’s disease. Participants were able to hear first hand some of the problems a person with Parkinson’s experiences related to both the disease process and treatment.
Kirsten Carlson, PhD, a scientist with the Michael J. Fox Foundation (MJF) provided a comprehensive overview of the significant work being done to fulfill the foundations aggressive mission of discovery – leading to better treatments and a cure. She discussed ongoing MJF research projects. She also introduced methods in place for researchers to communicate ideas and share information through a web program “PD Online Research”. Participants had ample opportunity to ask questions and share ideas.
At the end of the day, program planners provided a recap of the day’s presentations with an opportunity for informal discussion. Interested members of Boston University’s alumni group were invited to attend and participate in this discussion.
The PD forum planning team included Ben Wolozin, Marie Saint-Hilaire, Cathi Thomas, and Ray James. This program was supported by the American Parkinson Disease Association Advanced Center of Excellence. Special thanks to our distinguished presenters.
Please click here for the program agenda.
Recognizing the important role nurses play in the care of patients and families affected by Parkinson’s disease the Edmond J. Safra Foundation has awarded a grant to the Boston University/Boston Medical Center Parkinson’s Disease and Movement Disorder’s Center to provide a unique and comprehensive program to area Nursing Faculty.
Up to five nursing faculty will be selected after application to participate in this one week course which will take place the week of June 21st. Faculty will receive a combination of clinical patient and family exposure, small group lectures/discussions, and the opportunity to work on a Parkinson’s disease independent project. Content will cover signs and symptoms of PD, diagnosis, medical management, role of nursing, surgical management and follow-up, nursing research in Parkinson’s disease, basic science and clinical research, resources and family care. Cathi A.Thomas, MS, RN, CNRN is the BUMC host program director. She will be joined by other members of the Boston University Parkinson team across disciplines to provide a “state of the art” educational and collaborative program.
This Visiting Nursing Faculty (VNF) program was developed and successfully piloted in 2009 by Gwyn Vernon MSN, CRNP and Lisette Bunting-Perry, PhD(c), RN at the University of Pennsylvania. This year Boston University and Johns Hopkins University will join the University of Pennsylvania in offering this program.
For additional information please call 617-638-7737 or e-mail firstname.lastname@example.org
It is with great excitement that I announce an upcoming educational symposium and webcast program Parkinson’s Disease Across the Lifespan: A Roadmap for Nurses. This program is a collaboration of the American Parkinson Disease Association (APDA), National Parkinson Foundation (NPF), and the Parkinson Disease Foundation (PDF). The program will take place on Friday, May 21, 2010.
Please visit https://support.pdf.org/nursing where you can find additional details and register to attend in-person or via the Internet. A committee made up of nurses and one physical therapist has worked hard during the past year to provide a very comprehensive program. I am pleased to be part of this committee and program.
The program is designed for nurses delivering care to Parkinson individuals and families in all clinical settings, but particularly for nurses who have not had the chance to formally learn about caring for people with Parkinson’s but who want to learn more. We hope to include nurses who provide care in long-term care, home care, acute care, rehabilitation, and clinic settings. Nurses play an important role in the care of a person and family affected by Parkinson’s disease – please help us get the word out and share with a nurse you know.
Cathi Thomas, MS,RN, CNRN
The 1-888-606-1688 “helpline” will connect callers with Boston University licensed physical therapists
NEW YORK, Jan. 13 /PRNewswire-USNewswire/ — Helping people who have Parkinson’s disease (PD) access information on exercise recommendations, the American Parkinson Disease Association (APDA) and Boston University have established the country’s first National Resource Center for Rehabilitation. The center’s toll-free “helpline” telephone number is 1-888-606-1688, and callers will be able to speak with a licensed physical therapist who can answer questions about exercise, provide information about programs in the caller’s area and provide educational materials.
“Almost a decade ago, APDA successfully led the fight to secure physical therapy coverage for people with PD on Medicare,” said Joel Gerstel, executive director of the country’s largest grassroots organization serving America’s 1.5 million people diagnosed with the progressive, degenerative neurological disease.
“At the time, the benefits of exercise and physical therapy were under recognized, but today, exercise has proven a valuable tool in maintaining a healthy lifestyle for people with disease. APDA is again in the forefront by making free physical-exercise information readily available to patients, their caregivers and healthcare professionals across the country,” Gerstel said.
“Evidence supporting the benefits of exercise for people with Parkinson’s disease is growing,” said Terry Ellis, PT, PhD, a leader in neurological physical therapy research, and the new center’s director.
Dr. Ellis is a clinical associate professor in the department of physical therapy and athletic training at the College of Health and Rehabilitation Sciences: Sargent College. The new resource is an outgrowth of the Center for Neurorehabilitation’s Community Wellness Programs, which are exercise programs designed to improve mobility, quality of life and communications for persons with PD. These programs have benefited more than 400 people in 14 New England communities.
Dr. Marie Saint Hilaire, director of the APDA Center for Advanced Research at Boston University, points out the importance of exercise in the management of Parkinson’s disease. “Exercise helps to improve quality of life and day-to-day function in people with Parkinson’s disease,” said Dr. Saint Hilaire, who recommends that patients with PD consult with a physical therapist early in the disease process in order to reap the benefits right from the start.
Vlad Lyczmanenko, president of APDA’s Massachusetts Chapter, which is co-funding the center, said that his chapter strongly supports the initiative. “It is imperative that people with PD are first motivated to exercise and then have access to professionals who can help them with practical information about how to exercise correctly for their particular needs.”
Cathi Thomas, coordinator of the APDA Information & Referral Center at Boston University’s Medical Campus, noted the value to other healthcare providers and said the center will maintain updated lists of community rehabilitation specialists.
“Our objective is to share this knowledge with patients, caregivers, students and healthcare professionals,” said Dr. Ellis. “This partnership with APDA, also known for its pioneering efforts in physical therapy, will give anyone interested an easy, free pathway to the most up-to-date information.”
About APDA – www.apdaparkinson.org - With the unique dual mission to “Ease the Burden – Find the Cure,” APDA provides support and educational programs for people with Parkinson’s disease and their caregivers, and funds scientific research to find the cause(s) and cure for the progressive, degenerative neurological disease. APDA is the country’s largest grassroots organization serving America’s 1.5 million persons with PD.
About Boston University: The Center for Neurorehabilitation has a single goal to advance the quality of rehabilitation for those with neurological disorders. The Center offers Physical Therapy, Community Wellness Groups, educational programs and hope for a better quality of life through research-driven improvements in therapy. We’re a team of researchers, clinicians and educators with expertise in rehabilitation and movement science. Seldom do clinical practice, advanced research and community programs integrate so well or with such immediate benefits to patients.
SOURCE American Parkinson Disease Association
Please join us for an educational program designed for family caregivers.
For additional information, please Click Here for the event brochure.