.Neuro Challenge Distinguished Speakers in Bradenton, Florida (Free Event)

October 29, 2018

Neuro Challenge Foundation is a local non-profit organization dedicated to improving the quality of life of people with Parkinson's and their caregivers.

Speakers & Topics: "Living Well with Parkinson's" Dr. Deborah Boland, DO Be Mobile Neurology

"CLINICAL RESEARCH: 3 decades of clinical trials in Manatee County" Dr. William McElveen, MD

Bradenton Research Center Saturday, November 10th 9:00am - 12:00pm 

SCF Neel Performing Arts Center: 5840 26th St W, Bradenton, FL 34207

RSVP required click on link to register:

https://manateedistinguishedspeakerevent.eventbrite.com

 or call 941-926-6413 ext 200 — with Deborah Boland

Gene therapy trial for Parkinson's disease begins

29 October 2018    By Ewa Zotow

Appeared in BioNews 973

A novel gene therapy to improve symptoms in Parkinson's disease is being trialled by researchers in London and Paris. 

Parkinson's disease is a neurodegenerative condition characterised by progressively worsening motor impairments such as rigidity, tremor and balance problems. The symptoms are related to a decreased level of dopamine, an important neurotransmitter (a chemical messenger that transmits signals across brain cells). This is caused by a loss of dopamine-producing neurons in the part of the brain involved in motor functions, the substantia nigra. 

The treatment, called AXO-Lenti-PD, was developed by biotech companies Axovant and Oxford Biomedica. It aims to boost dopamine levels by delivering genetic instructions into the striatum of the brain where dopamine from substantia nigra is normally released. This is achieved by surgically injecting these cells with an inactivated virus that contains three genes involved in making dopamine. 

'Genes that increase the production of dopamine could help alleviate the symptoms of Parkinson's disease, potentially with fewer side effects than traditional drug treatments, by targeting only the areas of the brain that are lacking in dopamine,' said Professor Thomas Foltynie at University College London Hospital and a lead clinician on the study.

'While we do not yet know if it is effective, it is hoped this therapy will provide patient benefit for many, many years following a single treatment,' he added.

The precise delivery of the gene therapy may also limit the undesirable side effects of current therapies. It is important to note, however, that the therapy aims to improve the symptoms but does not slow down the progression of the disease.

The clinical trial of about 30 patients with Parkinson's disease will first evaluate the safety and tolerability of different doses in patients at hospitals in London, Cambridge and Paris. These findings will then inform the second stage of the study, where the researchers will look at the long-term effects of the therapy on motor functions, compared with a sham surgery to exclude potential placebo effects. The preliminary results from the first part of the study are expected in 2019. 

https://www.bionews.org.uk/page_139265

Unapproved Therapies Cause Significantly More Patient Injuries Than Reported by Cell Therapy Clinics

October 29, 2018

CHICAGO, Oct. 29, 2018 /PRNewswire/ -- A team of ophthalmologists went looking for scientific evidence in support of commercially available "cell therapy" for eye diseases. Not only did they find virtually none; they instead discovered a growing number of patients are being irreparably harmed by unapproved cell therapies. Their findings were presented today at AAO 2018, the 122nd Annual Meeting of the American Academy of Ophthalmology. 

The researchers' review of published studies found only a few case series, involving a total of 18 patients. All patients were reported to have had positive treatment outcomes or no improvement. However, the researchers were able to identify at least seven patients who experienced devastating harm from an unapproved cell therapy. 

The number of clinics that administer stem cell therapies that have not been authorized by the FDA has proliferated in recent years. Nearly 600 clinics have opened in the United States alone. These so-called therapy clinics tout their ability to help patients suffering from a broad range of conditions including the blinding eye disease, age-related macular degeneration, Parkinson's disease, autism and multiple sclerosis. 

In May, the FDA began cracking down on clinics marketing unapproved therapies after three women with macular degeneration lost their vision after undergoing an unproven stem-cell treatment at a Florida clinic. 

Ophthalmologist Ajay E. Kuriyan, M.D., treated one of those women following treatment at the stem cell clinic. He tried to save her vision, but the damage was too great. 

Determined to learn the extent of the problem, Dr. Kuriyan and Andrew Chen, M.D., and colleagues at the University of Rochester's Flaum Eye Institute and the University of Miami's Bascom Palmer Eye Institute, reviewed evidence supporting cell therapy published in scientific journals and from the clinic's websites and marketing materials. 

Though the clinics stopped advertising the treatment that blinded the women, many continue to offer therapies for a variety of blinding eye disease, including serpiginous choroidopathy, Leber Hereditary Optic Neuropathy, and nonarteritic anterior ischemic optic neuropathy.

What the researchers found is that the clinics omit poor outcomes in their reports. The data clinics report suggests that, at worst, no harm was done, and at best, patients experience improvement. But Dr. Kuriyan and his colleagues have found at least seven patients who suffered disastrous outcomes. 

"When you look at these company's websites and their publications, you'll see a big under-reporting of profound complications," Dr. Kuriyan said. "This is in stark contrast to what we have seen in our clinics and in our personal experience. There's a fairly significant number of patients who experienced poor, or in some cases devastating results. The cases published to date just scratch the surface of the number of bad outcomes." 

Dr. Kuriyan and his colleagues are currently collecting data for a larger study, detailing all the patients who suffered complications from unapproved cell therapy. 

What Patients can do to Protect Their Health

The cell therapy clinics are not only endangering patient health, Dr. Kuriyan warns, they are also threatening to undermine both legitimate scientific progress and the public's trust in stem cell research.  

To help patients identify legitimate research, Dr. Kuriyan advises against joining studies that require payment. Most large clinical trials don't require payment. Some smaller clinical trials may have a minimum cost, such as a copay or out-of-pocket deductible payment, and anything beyond that should be viewed more cautiously. 

Centers or clinics that only offer cell therapy is another red-flag, Dr. Kuriyan said. A reputable clinic will offer a variety of treatments for conditions.  Most importantly, he recommends patients ask questions and discuss potential treatments with their ophthalmologist. 

About the American Academy of Ophthalmology

The American Academy of Ophthalmology is the world's largest association of eye physicians and surgeons. A global community of 32,000 medical doctors, we protect sight and empower lives by setting the standards for ophthalmic education and advocating for our patients and the public. We innovate to advance our profession and to ensure the delivery of the highest-quality eye care. Our EyeSmart® program provides the public with the most trusted information about eye health. For more information, visit aao.org.

SOURCE American Academy of Ophthalmology

https://www.prnewswire.com/news-releases/unapproved-therapies-cause-significantly-more-patient-injuries-than-reported-by-cell-therapy-clinics-300739061.html

The ABCs of Parkinson’s: ‘J’ Is for the Junk and Jewels of PD

OCTOBER 29, 2018      BY "SHERRI WOODBRIDGE"

A continuation of the “ABCs of Parkinson’s” series.

You’ve likely heard that one’s man’s junk is another man’s treasure. Well, if not, you just did. One of my favorite things to do is to go to yard sales or thrift stores. I don’t look for anything in particular, but when I see something that catches my eye, I know that I have just stumbled upon a treasure that someone else threw in the “junk” pile.

Fifteen years have passed, come December, since my Parkinson’s disease (PD) diagnosis, though I’ve dealt with symptoms for over 20 or more. When I was told I had PD, I didn’t know much about it. I didn’t realize its implications, nor did I know what was (or could be) waiting for me down the road. I wondered how anything good could come from having a disease without a cure.

But then I met a stranger online through a PD chat room. Jewel 1 of having Parkinson’s disease was a stranger who became a close friend. Parkinson’s has come between some relationships in my life (junk) but it has also provided new, deep relationships in my life (jewel).

Jewel 2 is that my attitude regarding doctors was restored to a positive place when I met my movement disorder specialist. I had some pretty rotten experiences when it came to doctors, but his compassion, wisdom, humor, and availability gave me a renewed appreciation for doctors, especially those who have a great bedside manner.

Among the junk of PD, I have found other jewels. I learned to appreciate anew the time given to me right now; time to spend with my husband, my grown-up children, and my grandchildren. I have discovered just how important that jewel is, and it is perhaps my most treasured. Time is already short for each of us. Adding any sort of illness into the mix shortens that lifespan for so many reasons. Cherish the fleeting moments and live your best self through each one. 

Gratitude is just one more jewel I have experienced among the junk of PD. I was taking a walk with my grandson the other day and he kept looking up at the sky and smiling. I asked him what he was thinking. He looked up again, smiling, and replied, “The sky is just so blue.” A child sees through the eyes of wonder and often through unprompted thankfulness. It is a great joy to taste life through a child’s wonderment.

When experiencing discouragement or despair or if you’re just having a not-so-good day, try and find a jewel in your life. They are there. You may just have to uncover them.

***

Note: Parkinson’s News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Parkinson’s News Today or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to Parkinson’s disease.

https://parkinsonsnewstoday.com/2018/10/29/abcs-parkinsons-j-junk-jewels-pd/

Data Lacking on Link Between Genetic Mutations and Parkinson’s Symptoms, Review Finds

OCTOBER 29, 2018 BY JOANA CARVALHO 

There is a substantial lack of data describing the link between the genetic mutations identified as inheritable causes of Parkinson’s — those that affect the SNCA, LRRK2, and VPS35 genes — and patient symptoms, a review study has found.

Despite this missing information, the researchers conducting the review were still able to make some determinations, including findings indicating that SNCA mutation carriers are younger in age at disease onset and have additional psychiatric symptoms, while VPS35mutation carriers have a good response to levodopa therapy.

The study, “Genotype‐phenotype relations for the Parkinson’s disease genes SNCA, LRRK2, VPS35: MDSGene systematic review,” was published in Movement Disorders.

Parkinson’s disease, the second most prevalent neurodegenerative disease in the elderly after Alzheimer’s disease, is a complex, multifactorial disorder characterized by the gradual loss of muscle control, sometimes accompanied by cognitive deficits.

Previous studies have estimated that genetic factors may account for up to 34 percent of all Parkinson’s cases. More specifically, genetic mutations in the SNCA, LRRK2, and VPS35 autosomal genes (genes located on any chromosome other than sex chromosomes) are considered a cause of disease in up to 30 percent of all patients with Parkinson’s, depending on family history, age at onset, and population background.

“The International Parkinson and Movement Disorder Society Genetic mutation database(MDSGene) aims to systematically collect clinical and genetic information for movement disorder patients who have pathogenic mutations. In this study, we present a systematic MDSGene review and devote it to autosomal-dominant PD [Parkinson’s disease] across the three disorders, PARK-SNCA, PARK-LRRK2, and PARK-VPS35,” the researchers wrote.

The comprehensive, systematic review gathered information from 199 studies (54 onSNCA, 133 on LRRK2, and 12 on VPS35) involving a total of 937 patients (146 SNCA, 724 LRRK2, and 67 VPS35 mutation carriers) with inherited Parkinson’s disease attributed to 44 different mutations in these three genes.

“A major challenge for this systematic review was the degree of missingness of phenotypic [disease symptoms] data. Missing data not only affected non-motor signs and symptoms (NMS) of all patients, but specific information was even often unavailable for basic demographic information such as age at onset or sex or cardinal motor signs,” the authors said.

Despite the lack of data, the review managed to validate findings from previous studies showing that patients carrying mutations in the SNCA gene were more likely to develop Parkinson’s disease at an earlier age than those carrying mutations in LRRK2 and VPS35.

Pooled data also revealed that SNCA mutation carriers more frequently experienced psychiatric symptoms, while LRRK2 mutation carriers rarely had atypical symptoms of Parkinson’s disease. The researchers also found that VPS35 mutation carriers responded rather well to levodopa therapy.

“The most significant finding is the proportion of missing phenotypic data. … We propose to utilize MDSGene as the basis for the systematic collection of curated clinical and genetic information on inherited movement disorders as a solution to increase reporting of phenotypes for better genetic counseling and future gene-specific therapies,” the researchers wrote.

“To this end, the MDS Task Force on Genetic Nomenclature in Movement Disorders is drafting checklists that we propose should become the standard for clinical data reporting of individuals with movement disorders. Standard reporting of core features could improve the situation considerably,” they concluded.

https://parkinsonsnewstoday.com/2018/10/29/data-lacking-link-between-parkinsons-symptoms-genetic-mutations-review-study/

Investigational Gene Therapy AXO-Lenti-PD Tested in Phase 1/2 Clinical Trial in Parkinson’s Patients

OCTOBER 29, 2018 BY ALICE MELÃO IN NEWS.

The first patient has been dosed in Axovant’s Phase 1/2 clinical trial testing the investigational gene therapy AXO-Lenti-PD for the treatment of Parkinson’s disease.

The patient reported no complications associated with surgery or administration of the therapy and was discharged as planned in the initial trial design. Preliminary data from the first group of patients treated in the trial are expected to be announced during the first half of 2019.

Currently recruiting participants, the trial (NCT03720418) is expected to enroll about 30 patients ages 48-70 who have had bilateral idiopathic (of unknown cause) Parkinson’s disease for at least 5 years.

The study, being conducted in the United Kingdom and France, consists of two parts. In part A, researchers will evaluate the safety and tolerability of increasing doses of the investigational gene therapy, and select the optimal dose to be used in further testing.

Part B is a randomized, double-blind phase in which patients will receive either the designated dose from Part A or an imitation surgical procedure (ISP). Patients will be followed for about 6 months to assess AXO-Lenti-PD’s safety and potential to enhance motor function and improve movement control.

AXO-Lenti-PD, also known as OXB-102, is a gene therapy that uses a harmless virus-based system to deliver three genes that encode critical enzymes involved the synthesis of dopamine — the signaling molecule, or neurotransmitter, produced at low levels in Parkinson’s patients.

This treatment is expected to provide significant and long-lasting clinical benefits to patients with Parkinson’s disease upon a single administration.

The gene therapy was initially designed by Oxford BioMedica, which in June 2018 grantedthe exclusive worldwide rights over AXO-Lenti-PD’s development and marketing to Axovant Sciences.

“We are very excited to bring AXO-Lenti-PD into clinical development and believe it will be an important new therapy for patients with Parkinson’s disease who suffer from motor fluctuations on the current standard of care,” Pavan Cheruvu, MD, the CEO of Axovant, said in a press release. “This marks the first of our gene therapy programs to enter the clinic, and our focus now is on rapid execution of the clinical study.”

A recently completed Phase 1/2 trial of ProSavin (NCT00627588), AXO-Lenti-PD’s predecessor, demonstrated favorable safety and tolerability and a significant improvement of motor function at 6 and 12 months in Parkinson’s patients. This benefit was sustained for up to six years.

Compared with ProSavin, preclinical studies of AXO-Lenti-PD showed increased production of the key enzymes, as well as at least a fivefold greater potency in improving behavior and movement in an animal model of the disease.

“Building upon the evidence of safety and durable improvements in motor symptomsseen up to six years in the prior clinical study of ProSavin, we feel a sense of urgent responsibility to accelerate the development of AXO-Lenti-PD,” Cheruvu said.

“Mid- to late-stage Parkinson’s disease remains a challenge to treat, with current therapies leading to debilitating adverse events and unpredictable therapeutic effects over time,” said Stéphane Palfi, MD, PhD, coordinating investigator of the AXO-Lenti-PD trial.

“We are pleased to advance AXO-Lenti-PD in the clinic and are eager to see the trial expand upon the long-term safety and efficacy results we observed in the Phase 1/2 clinical trial of ProSavin,” he said.

https://parkinsonsnewstoday.com/2018/10/29/gene-therapy-axo-lenti-pd-in-phase-1-2-trial-in-parkinsons-patients/

Major Parkinson's study is seeking 10,000 healthy volunteers

Oct 28, 2018    By Danny  Buckland

Parkinson's affects one in 100 over-60s in the UK

THE world's largest study into the early signs of Parkinson's disease, involving 10,000 Britons, could unlock new methods of treating the illness. Scientists hope it could lead to a test being developed that would spot the disease and allow drugs to slow down its progression before problems with movement and memory take hold.

The study, funded by Parkinson's UK, is seeking 10,000 volunteers aged over 60 who do not have a diagnosis of the disease, which is caused by a loss of nerve cells in the brain.

An online test to assess brain function will involve patients tapping keys on a computer keyboard.

There will also be a smell test with 40 scratch and sniff aromas - from pizza to melon.

The cause of Parkinson's is unknown but scientists believe some of the earliest areas affected are involved with the sense of smell, the gut and parts of the brain involved in sleep.

Parkinson's affects one in 100 over-60s in the UK and scientists hope the Predict-PD project, launched tomorrow, will deliver a set of performance markers that could be used by GPs, who currently have no definitive diagnostic tools.

At least one in 10 people are misdiagnosed and many suffer distressing delays before their condition is confirmed.

Neurologist Dr Alastair Noyce of Queen Mary University of London, who is leading the research along with Professor Anette Schrag of University College London, said: "We believe we can pick up people at least two years, if not five years, ahead of when they'd normally be diagnosed."

Details: https://predictpd.com

https://www.express.co.uk/life-style/health/1037486/parkinson-study-healthy-volunteers-disease

Our Mobile Health and Parkinson’s UK create apps and devices library

By Leontina PostelnOctober 29, 2018

The new 'Tried and Tested' digital health tools library; Source: Our Mobile Health/ Parkinson's UK

Parkinson’s UK and Our Mobile Health have launched an apps and devices library to help people living with Parkinson’s manage their symptoms in response to increasing demand for trusted digital health tools.

Following an independent assessment process, six apps reviewed against ten key attribute areas, including interoperability, patient safety, and regulation, have been approved so far.

Recent figures indicate that two people are told every hour that they have Parkinson’s in the UK, with the number expected to rise by nearly a fifth by 2025, from around 145,000 people diagnosed in 2018 to 168,000, according to Parkinson’s UK. Globally, it is thought that as many as ten million people are living with the condition.

The initiative is being led on the charity's side by Emma Lawton, who was diagnosed with Parkinson’s at the age of 29.

“Parkinson’s UK’s helpline was increasingly being asked whether apps and devices, that people had seen or heard about, could help with their symptoms. We wanted to provide consistent advice on this area with real conviction, as Parkinson’s UK should have a strong voice in this rapidly growing area. That’s why we created the library, to help provide the right advice and guide people to apps and devices that are safe and effective to use,” Lawton, who is the Project Lead for Apps and Devices at Parkinson’s UK, said.

The six apps are: 

• Swallow Prompt - helping people that have difficulty in managing their saliva 
• Voice Analyst - providing support for users to help measure the volume and pitch of their voices
• Kindeo - allowing people to store important memories
• Pzziz - addressing sleep issues
• Cove - helping users express how they feel by creating music
• Beat Panic - offering support to help cope with panic attacks. 

“Using our rigorous independent health app review process we have been able to help identify potentially suitable health apps, thoroughly review them and identify those which can then be taken forward. The user testing and feedback from those living with Parkinson's has been invaluable as it has helped to further improve the quality of apps and digital health solutions targeted at those living with Parkinson's,” said Julie Bretland, Our Mobile Health founder and CEO.

The launch of the library follows a partnership announced in December 2017.

“Ultimately we want to see people being referred to the library alongside their medication," added Julie Dodd, Parkinson's UK Director of Digital Transformation and Communication. "And we hope that other charities will follow, to create a network of libraries that can benefit people living with many different conditions."

Twitter: @1Leontina

Contact the author: lpostelnicu@himss.org

https://www.mobihealthnews.com/content/our-mobile-health-and-parkinson’s-uk-create-apps-and-devices-library

High carbohydrate diet may induce obesity in some: StudyHealth

Oct 28, 2018 

The study showed a surprising difference between two sets of the fruit flies when feeding with alternate diets high in protein and high in carbohydrates.

New York: Researchers have identified a DNA mutation common in animals that may explain why a diet high in carbohydrates induces obesity and diabetes in some but not others. The study, published in the journal PLOS Genetics, showed a surprising difference between two sets of the fruit flies when feeding with alternate diets high in protein and high in carbohydrates.

Fruit fly larvae with a noted mitochondrial DNA (mtDNA) mutation showed a pronounced increase in development when eating high carbohydrate diet of banana, but stagnated on a high protein diet of passion fruit, Xinhua news agency quoted the study as saying. Conversely, fruit fly larvae without that mutation thrived on the high protein diet, but dropped in frequency when put on carbohydrates, the report said.

The six-year collaborative study by Australian, American and Spanish researchers challenged the neutral theory of molecular evolution in which changes in species at the molecular level are random, not caused by natural selection and provide no benefit or disadvantage to the species.

According to lead author Bill Ballard from the University of New South Wales, the research was a rare demonstration of positive selection at work in evolution. Given that humans share 75 per cent of the same genes as fruit flies, and have the same mtDNA genes, it is likely, according to the study, that the same mutation inherited in human mtDNA may metabolise carbohydrates in a similar way.

"But, the news is not all bad for people harbouring the mutation," said Ballard. "You would need to manage your carbohydrate intake when you are younger, but if you are unfortunate enough to develop Parkinson's Disease, a high carbohydrate diet will help you maintain weight," Ballard added.

https://www.timesnownews.com/health/article/high-carbohydrate-diet-may-induce-obesity-in-some-study/305723 

The Vision of a Daughter and Granddaughter

The Vision of a Daughter and Granddaughter

The Melvin Weinstein Parkinson’s Foundation is a not for profit organization with a clear mission. We purchase equipment and supplies necessary to maintain a safe and healthy environment for Parkinson’s patients. Of course, there is a little more to the story.

Melvin Weinstein was actively involved in real estate development throughout Virginia. Over the years he consistently gave back to the community in many ways, leading by example and providing enthusiasm to every project. Melvin was diagnosed with Parkinson’s at 68 years of age and fought the disease over ten years until his death on December 28, 1997. He continued his charitable contribution despite being afflicted with the debilitating and devastating Parkinson’s Disease. Our organization is named to thank him, honor him and carry on his philanthropic legacy.

As a family we were fortunate. We had the financial capability to provide Melvin with all the equipment, supplies and home renovations to help make his life with Parkinson’s easier. When his wife, Mollie, was no longer able to be his sole caregiver, we were able to hire nurses to help and watch over Melvin around the clock. The thought of the less fortunate Parkinson’s patients not having their needs met is simply not acceptable to us.

In memory of Melvin Weinstein and all people who have lost their lives to Parkinson’s Disease, we vow to continue to provide assistance to individuals courageously battling this degenerative neurological disease as they face potentially devastating financial distress.

How wonderful it is that Melvin’s personal struggle with Parkinson’s has inspired our vision for this foundation, focusing on the less financially privileged Parkinson’s patients. Won’t you join us? Help us to help them.

Marsha Weinstein Anthony

Traci Gladstone Corcoran

In October, 2008 the Parkinson’s Disease Foundation announced its affiliation with the MWPF.   This joint effort known as the Helen M. Lynch Direct Aid Fund of the Parkinson’s Disease Foundation and the MWPF was established with a private gift.  This program has enabled us to help many more people suffering with Parkinson’s Disease.

Generous support of the activities of the Melvin Weinstein Parkinson’s Foundation is provided by the Edmond J. Safra Foundation.

Apply for Help

Go to:        http://www.mwpf.org/apply-for-help/

If you have been diagnosed with Parkinson’s disease and would like to apply for assistance, please download and fill out the application here.

We will be in contact once your application is received.

Mail to:

Melvin Weinstein Parkinson’s Foundation
2224 Va Beach Blvd., Suite 205
Virginia Beach, VA 23454

For more information call 757-313-9729 or email at mwpfassistance@verizon.net

http://www.mwpf.org/our-story/