Sunday, August 14, 2022

Ohio Parkinson Foundation Northeast Region

Parkinson’s Foundation Center Of Excellence

Getting Expert Parkinsons Disease Care in Eastern North Carolina

Cleveland Clinic’s Parkinson Disease Program is the first multi-site program to receive designation as a Center of Excellence. Programs included in this designation serve patients at Cleveland Clinic in Cleveland, Ohio, Cleveland Clinic Abu Dhabi, Cleveland Clinic Florida, and Cleveland Clinic Lou Ruvo Center for Brain Health – Las Vegas.

A Parkinson’s Foundation Center of Excellence is an academic medical center with a specialized team of neurologists, movement disorder specialists, physical and occupational therapists, mental health professionals and others who are up to date on the latest Parkinson disease medications, therapies and research to provide the best care.

Every Center of Excellence designation is awarded based on a rigorous application and peer-review process with the following criteria:

  • Must see at least 700 unique patients with Parkinson disease annually
  • Conduct research relevant and/or clinical trials for Parkinson disease
  • Provide exemplary team care, including a neurologist with training in movement disorders, nurse, social worker, physical therapist, occupational therapist and speech-language pathologist
  • Promote access to wellness programs for patients
  • Facilitate educational events for patients and families

To learn more about this distinguishing designation, visit Parkinson.org.

Cleveland Clinic Brain Study

What happens to the brain and body before a neurological disease is diagnosed? Cleveland Clinic’s Brain Study will change the landscape of neurodegeneration science. By researching at-risk normal individuals over the course of 20 years, we will learn what is happening to the brain and body before a neurological disease is diagnosed. Help us realize a future without neurological disease.

Event Is Free But Registration Is Required

Online registration is now closed. Please call 216-342-4417 with questions.

Proof of COVID-19 vaccine+booster is required at the door for event entry. Based on current case levels in Cuyahoga County, mask wearing will be required for all attendees. Mask/vaccine policies are subject to change based on current CDC guidelines. InMotions mask and vaccination policy can be found here.

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Growing Reach In A Pandemic

InMotion has been closed since March due to the pandemic. However, that hasnt stopped our commitment to bringing people with Parkinsons disease and their families the resources they need to feel better every day. With our new remote program delivery through Zoom to our clients, and videos on our website available to anyone, our reach has begun to grow beyond northeast Ohio. Funding from the Adira Foundation helped make this possible by underwriting the cost of Zoom subscriptions and iPads that have enabled us to livestream our classes.

We had been toying with the idea of livestreaming our group classes to reach people with Parkinsons disease outside northeast Ohio, but it wasnt until COVID-19 hit that we began implementing a remote program in earnest. We made the decision to close March 13, a few days before our governor issued a statewide shutdown order, but we knew that because exercise is so important to managing Parkinsons symptoms, we couldnt close without giving our clients something to help them stay fit and healthy. Over the weekend, our coaches created a few short exercise videos, which we posted on our website for our clients.

Now we have a full schedule of classes available remotely via Zoom and as of Aug. 18, have had 2,860 client visits to our remote classes. And, people throughout the country are able to access our videos at beinmotion.org. Best of all, these resources are free.

Parkinsons Boot Camp 2015 A Rousing Success

National Parkinson Foundation Ohio Announces Cleveland Moving Day Is ...

A capacity crowd of 850 filled the John S. Knight Center in Akron on Saturday, September 19 for the Seventh Annual Northeast Ohio Parkinsons Boot Camp. People with Parkinsons and their caregivers were treated to a free, day-long, interactive event where they learned exercise techniques, mind and body wellness practices and invigorating skills to help them manage their Parkinsons disease .

Highlights of the day included:

  • Presentation of two Parkinsons Disease Champion Awards to Kim Ganley and Brian Butler:
  • Kim Ganley is a member of the Ganley Auto Group family and sits on the board of directors of the UH Neurological Institute. Her father suffers from PD, and helps drive her passion for supporting those with the disease. Kim has been instrumental in developing and growing the Boot Camp from its inception.
  • Brian Butler, RN, MSN, who was diagnosed with PD in 2012, is a U.S. Army veteran and retired UH nurse. He generated both awareness and funds for Parkinsons through his journey earlier this year on the Appalachian Trail.
  • Kim Ganley surprised Dr. Benjamin Walter, MD with a donation that will allow the Parkinsons and Movement Disorders Center to continue to provide education and research to improve the lives of those who suffer from PD.
  • Exercise sessions specifically tailored for those with PD, including Zumba for PD and Delay the Disease
  • The following presentations were given at the 2015 Parkinsons Boot Camp. Please click on the links to download them.

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    Neurological Restoration Research Programs

    The Neurological Institute advances research into disease of the brain and spine and conducts clinical therapeutic trials to support patients with neurological disorders. Our multidisciplinary research collaboration combines the expertise of clinical principal investigators with state-of-the-art imaging and data analysis to establish and implement new approaches to the treatment of neurological diseases. In addition, the Neurological Institute trains clinical fellows, full-time research fellows, and residents as next generation clinical research scientists.

    Clinical trials and research are the key for advancing medial knowledge and patient care. They provide hope through offering testing of new drugs, new surgical techniques or other treatments before they are available.

    Ohio Parkinson Foundation Northeast Region

    Ohio Parkinson Foundation Northeast RegionP.O. Box 271www.ohparkinson.org/ne

    Disclaimerthe website is intended to inform our readers of recent developments in the Parkinson Community. Any advice or recommendations contained herein should not be taken without first consulting your own physician. You should always consult your doctor regarding all matters pertaining to your health.Ohio Parkinson Foundation Northeast RegionP.O. Box 271

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    Registration Now Open For Free Parkinson’s Boot Camp: The Frugal Patient

    1. OhioHealth Parkinsons Lecture Parkinsons Foundation Ohio Offerings

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    Dance and its benefits will be part of the Sept. 5 Northeast Ohio Parkinson’s Boot Camp presented by University Hospitals Neurological Institute, Courageous Steps for Parkinson’s and Ohio Parkinson Foundation Northeast Region.

    CLEVELAND, Ohio — University Hospitals Neurological Institute is, once again, offering its free, all-day Parkinson’s Boot Camp to help patients learn to better manage the disease. And registration for the Sept. 7 event is now open.

    This years camp includes a special session for caregivers and family members. Space in that session is limited and requires separate registration. In addition, another caregiver must accompany the Parkinsons patient so he or she is not left unattended.

    The camp, which begins at 8:30 a.m. with breakfast and runs to 3 p.m., is at the John S. Knight Center, 77 E. Mill St., in Akron. Lunch is also provided.

    The day will include a question-and-answer session with doctors, a talk on the latest Parkinsons research and yoga and dance instruction.

    In addition, presentations will be made by Dr. Benjamin Walter, director of the University Hospitals Movement Disorders Center and medical director of the Deep Brain Stimulation Program Dr. Monique Giroux, medical director of the Movement & Neuroperformance Center in Colorado and representatives from the Michael J. Fox Foundation.

    Registration – at uhhospitals.org/PDbootcamp or 216-983-5741 — is required.

    On Twitter:

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    Huntington Disease Society Of America Center Of Excellence

    Cleveland Clinics Center for Neurological Restoration is one of 43 centers to be designated as a HDSA Center of Excellence by the Huntington Disease Society of America.

    The HDSA Center of Excellence is designated to health care facilities that provide an elite multidisciplinary approach to Huntington disease care and research.

    At these world-class centers, patients benefit from expert neurologists, psychiatrists, therapists, counselors and other specialized professional who have deep experience working with families affected by HD and who work collaboratively to help families plan the best HD care program throughout the course of the disease.

    To learn more about this designation, visit HDSA.org.

    Young Onset Parkinson Disease Support Group

    Mission Statement

    Our mission is to establish the optimal quality of life for the Northeast Ohio community by providing support, information, and advocacy to improve the lives of those with young onset Parkinson disease and those who care about them. We achieve our mission through public awareness, education, advocacy and supporting research until a cure is found. Our goal is to help you be informed, live well and stay strong.

    About Parkinson Disease

    Parkinson disease is a neurological disorder that affects movement. Symptoms may include slowness, rigidity, tremor, and problems with balance and posture. The symptoms of Parkinson disease result from the loss of dopamine-producing cells in the brain, but the cause of cell loss is not known. Medications and surgical treatments can relieve symptoms but do not cure the disease. More than a million people in the United States have Parkinson disease.

    There are several excellent websites that provide information about Parkinson disease and its treatment. See some of our favorites under resources.

    What is young onset?

    The average age at which Parkinson disease is diagnosed is 60. However, about 10-20% of those diagnosed with Parkinson disease are under age 50, and about half of those are diagnosed before age 40. When the diagnosis is made early, it is referred to as “young onset” Parkinson disease. So young onsets face different challenges than those diagnosed in their 60s and 70s.

    How can a support group serve you?

    Contact Us

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    Parkinsons Foundation Great Lakes

    Parkinsons Foundation Great Lakes makes life better for people with Parkinsons disease by improving care and advancing research towards a cure. Although our office is in Columbus, we provide education, resources and programs throughout the states of Ohio, Michigan and Western Pennsylvania. Whether you are newly diagnosed with PD or have been managing it for years, a care partner, family member or friend of someone with PD, we are here to help you.

    Movement Disorders And Functional Neurosurgery

    National Organizations

    Staff in the Center for Neurological Restoration’s Section of Movement Disorders and Functional Neurosurgery offer unparalleled expertise in the latest treatments for movement disorders to help people improve function and quality of life.Treatments include medication, therapy and surgical management. Patients also have access to the most promising treatments of tomorrow through numerous clinical trials in which the center participates.

    Medical management is the cornerstone of movement disorder care. Pharmacological management , patient education and family support are important aspects of the comprehensive treatment plan we provide for each of our patients. As movement disorders are often accompanied by behavioral, cognitive and other “non-motor” complications, our multidisciplinary team also can guide you with issues such as depression, cognitive decline, nutrition and disease prognosis.

    The center has earned international recognition for setting the standards of care for movement disorders. In particular, people with Parkinson’s disease, essential tremor or dystonia will benefit from the comprehensive, integrated approach to patient care provided by center staff. Team members collaborate on each patient’s particular problem and unique needs so that an individualized management and treatment plan can be developed.

    The Movement Disorders and Functional Neurosurgery team also offers:

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    Curepsp Foundation Psp Care Center

    Cleveland Clinics Center for Neurological Restoration is designated as a PSP Care Center through the CurePSP Foundation.

    The CurePSP Center of Care network was established in 2018 with a main focus of helping referring physicians and patients diagnosed with progressive supranuclear palsy and corticobasal degeneration find the best medical care in convenient locations across the United States and Canada.

    The network also seeks to:

    • Increase knowledge and overall awareness of PSP and CBD spectrum disorders by providing educational materials to patients, caregivers, and health professionals.
    • Provide local/regional resources for physicians seeking information about PSP and CBD, helping to facilitate easy patient referral to clinical trials and better overall disease management.
    • Promote collaboration between care centers that will optimize standards of patient care and establish hubs for PSP/CBD clinical research.

    To learn more about this designation, visit PSP.org.

    Business Master File Data

    Below are some key data points from the Exempt Organization IRS Business Master File for this organization. Learn more about the BMF on the IRS website

    Activities:

    Described in section 509 of the Code

    Discussion groups, forums, panels lectures, etc.

    Foundation Status:

    Organization that normally receives no more than one-third of its support from gross investment income and unrelated business income and at the same time more than one-third of its support from contributions, fees, and gross receipts related to exempt purposes. 509

    Affiliation:

    Independent – the organization is an independent organization or an independent auxiliary .

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    Thanks For Signing Up

    We are proud to have you as a part of our community. To ensure you receive the latest Parkinsons news, research updates and more, please check your email for a message from us. If you do not see our email, it may be in your spam folder. Just mark as not spam and you should receive our emails as expected.

    How You Benefit

    Advanced Care Planning for Parkinson’s disease: What is Advanced Care Planning?
    • Learn about your health and ancestry
    • Find out if you carry known genetic mutations associated with Parkinson’s
    • Receive monthly updates as new health discoveries are made and see how they apply to YOU
    • Help advance medical research

    Here are some ways to help get the word out:

    Here is some language you might consider using:

    I am helping to advance research in Parkinson’s by participating in the 23andMe Parkinson’s Community. I’m asking you to consider joining this research program to help in the fight against Parkinson’s. All that is required is a saliva sample and the ability to answer questionnaires over the internet. 23andMe hopes to get 10,000 people with Parkinson’s involved–they are over halfway there already!

    Thank you!

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