Engineered Stem Cells Could Be Next Parkinson’s Treatment, Researchers Say J

JANUARY 4, 2019 BY CATARINA SILVA IN NEWS.

Cutting out a portion of or removing a gene linked to Parkinson’s disease protects against the formation of toxic protein clumps within brain cells, scientists have found.

This discovery has the potential to significantly affect the development of next-generation cell-based therapies, which involve injecting healthy cells into brain regions already affected by the disease. Researchers believe the approach may help relieve motor symptoms such as tremor and balance issues.

Findings were published in the study, “Engineering synucleinopathy-resistant human dopaminergic neurons by CRISPR-mediated deletion of the SNCA gene,” in the European Journal of Neuroscience. The work was funded by the U.K. Centre for Mammalian Synthetic Biology, UCB, and The Cure Parkinson’s Trust.

Mutations in the SNCA gene have been found to cause Parkinson’s, a condition characterized by the selective death of midbrain dopamine-producing neurons due to clustering of a protein called alpha-synuclein, also known as Lewy bodies.

Transplantation of dopamine-producing neurons has proved useful in disease management because it can reinnervate Parkinson’s-affected brain regions, restore dopamine levels, and provide symptom relief.

Clinical studies on the transplant of fetal mesencephalic (meaning “of or relating to the midbrain”) tissue into the striatum — a critical area of the brain involved in Parkinson’s — have shown that although some patients saw their motor symptoms improved, others had transplant-induced dyskinesias — abnormal, uncontrolled, and involuntary movement.

Importantly, transplanted tissue (grafts) older than 10 years developed Lewy bodies, which reduced the symptomatic benefit to the patient.

“These clinical observations highlight the need for cell therapies that are resistant to the formation of Lewy bodies. … Such disease-resistant cells will be particularly important for patients with young-onset Parkinson’s or genetic forms of the condition with substantial alpha-synuclein burden,” the researchers wrote.

The team used a gene editing tool known as CRISPR-Cas9. This technique allows scientists to edit parts of the genome by removing, adding, or altering specific sections of the DNA sequence.

Using stem cells, researchers created two distinct cell lines: one with snipped-out portions of the SNCA gene and another without the SNCA gene.

These stem cells were then transformed into dopamine-producing neurons and treated with a chemical agent (recombinant alpha-synuclein pre-formed fibrils) to induce the formation of Parkinson’s-related Lewy bodies.

The team reported that wild-type neurons, or unedited brain cells, were fully susceptible to the formation of toxic aggregates, while engineered cells were significantly resistant to Lewy body formation.

“We know that Parkinson’s disease spreads from neuron [to] neuron, invading healthy cells. This could essentially put a shelf life on the potential of cell replacement therapy. Our exciting discovery has the potential to considerably improve these emerging treatments,” Tilo Kunath, PhD, group leader at the Medical Research Council’s Centre for Regenerative Medicine, University of Edinburgh, and senior author of the study, said in a press release.

By finding a way to “shield” cells from Parkinson’s molecular changes, scientists may have opened the door to the development of cell therapies capable of diverting time’s negative effect on transplanted tissue.

https://parkinsonsnewstoday.com/2019/01/04/engineered-stem-cells-potentially-next-parkinsons-treatment/

Meeting Michael J. Fox: 80s icon, inspiration Steve

By STEVE BARNHOORN    JANUARY 4, 2019 

 Michael J.Fox

Steve Barnhoorn

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Since my mom’s passing in 2017, I’ve found myself seeking out people who inspire me – like my longtime role model Michael J. Fox, whom I met at an appearance in Toronto.

Michael arrived on the scene in September 1982, with the debut of the sitcom Family Ties. As a freshman at Finger Lakes Community College, I quickly became a faithful watcher. I could easily relate to Michael’s character Alex P. Keaton, the conservative teenager who adored Ronald Reagan and had a picture of Richard Nixon on his nightstand. (I myself had an autographed photo of Reagan on my bookshelf, a coincidence that makes me laugh to this day.) 

Three years later, Michael’s role in Steven Spielberg’s blockbuster Back to the Future turned him into a bona fide A-List star. In August 1985, I was busy working a summer job at a mortgage bank in Rochester, participating in local politics, and preparing for my senior year at St. John Fisher College. It was a great diversion to go to Canandaigua’s Townline Cinema and watch Michael portray Marty McFly, a teenager accidentally transported back to the year 1955 in a plutonium-charged DeLorean. The movie was chock full of action, humor and suspense. 

In the years since, it’s been harder to watch Michael play a tougher role as he battles Parkinson’s disease. He has continued to be an inspiration, moving forward with new projects and showing a great perspective on living every day to the fullest. 

So when I learned that Michael would be appearing at Toronto’s FAN EXPO Canada, one of North America’s largest Pop Culture events, I grabbed my chance. The few hours of driving and crowded waiting lines were worth it. 

Walking past a DeLorean on the convention floor, I recalled a panel discussion with the Back to the Future cast. Michael had said there were 90 different versions of the DeLorean, every single one of them uncomfortable. Peeking into the car, I could see he was right: there was no way a tall person like Yours Truly was going to try and fit in the driver’s seat. 

When I reached Michael, he looked subdued but with spirit remaining in his face. While I was admittedly awe-struck, I managed to tell him how much I admired him and that it was honor just to be in his presence. 

I was powerfully impressed that Michael posed for pictures and autographed items for countless fans. To me, it was a gallant display of courage and strength that spoke volumes about his love for his fans, and theirs for him. A portion of the money I paid for my photo op went to the Michael J. Fox Foundation to help find a cure for Parkinson’s disease, and I feel honored I could help in a small way.

In an even bigger way, it was my honor to meet an actor who truly defined a decade I recall with great fondness – and who continues to inspire me to overcome adversity.

Steve Barnhoorn of Honeoye is a member of the Richmond Town Board.

http://www.thelcn.com/lcn06/meeting-michael-j-fox-80s-icon-inspiration-20190104

Parkinson’s patients learn to SPEAK OUT!

Kim AdelmanJanuary 4, 2019

Participants in CSD Loud Crowd program.

Illinois State University’s Eckelmann-Taylor Speech and Hearing Clinic received a grant from the Parkinson’s Voice Project. The grant includes training for the speech-language pathologists and graduate clinicians to provide an innovative voice treatment for individuals with Parkinson’s disease.

SPEAK OUT! with LOUD Crowd provides a two-part speech therapy program to help individuals with Parkinson’s regain and maintain effective communication.

SPEAK OUT! places emphasis on speaking with intent and converting speech from an automatic function to an intentional act. 

After the patient completes the SPEAK OUT! Program, they transition into the LOUD Crowd. LOUD Crowd is a maintenance program which consists of weekly group sessions. LOUD Crowd provides support, encouragement, and accountability to the group members.

Individuals with Parkinson’s disease typically notice changes in their speech. Common changes in speech include speaking softly or in a monotone voice, hesitating before speaking, slurred speech, or speaking too fast. By participating in SPEAK OUT! and LOUD Crowd patients with Parkinson’s Disease are able to strengthen the muscles used for speaking and swallowing and teach them to speak with intent.

The Eckelmann-Taylor Speech and Hearing Clinic is currently taking new Parkinson’s patients to enroll in this program. To schedule an evaluation, please contact the clinic at (309) 438-8641.

Filed Under College of Arts and Sciences Communication Sciences and Disorders Eckelmann-Taylor Speech and Hearing Clinic

https://news.illinoisstate.edu/2019/01/parkinsons-patients-learn-to-speak-out/

UA creating faster, more accurate MRI technologies

January 4, 2019

By: Taja Davis

Lying perfectly still for an hour in an MRI machine can be really tough, especially for patients with Parkinson's disease. Using a $2.1 million grant from the National Institute of Neurological Disorders and Stroke, a team of University of Arizona researchers are creating faster MRI technologies to accommodate challenging patient populations.

"Most importantly we don't want to keep the patient in the scanner forever. So we want to get higher resolution information quickly, and accurately using new technology," said Dr. Nan-kuei Chen, the lead researcher and a biomedical engineering associate professor at UA.

Scan times will be reduced from 40-60 minutes to close to 15 minutes, or even shorter depending on a patient's condition. The team wants to create technologies that will give doctors more information about the stage of a disease, even allowing earlier diagnoses.

"We know that the disease of PD starts usually 10 or 15 years before the motor symptoms start. So something in the brain is happening, you know, long before the motor symptom appears. So we want to evaluate new technologies and see if we can use new technology to detect brain signal abnormality in the early stage of Parkinson's Disease," said Chen.

Patients with conditions, like Parkinson's, who move frequently, can alter the accuracy of their MRI scans.

"It's very difficult for them to stay inside for 30 minutes or 60 minutes. It's very uncomfortable for a seriously ill patient to stay in an MRI scan for a long period of time. Even for a healthy volunteer, its more pleasant to stay in for a shorter period of time," said Chen.

The team consists of about 10 researchers from UA's campus and surrounding area. One expert, has known Chen from his days as a grad student and is very excited to be a part of this research.

"My graduate research focused on developing advanced MRI techniques, but they were more for body applications, like the imagining the liver. So its interesting and its exciting to be able to translate those approaches to the brain, and it comes with its own challenges," said post-grad researcher, Mahesh Keerphivasan.

A system that helps validate what is seen on MRI imagery is a device called TMS, which stands for trans-cranial magnetic stimulation. And is a big part of this project.

"Because we are going to use the TMS to validate the brain circuitry. So currently we're using that to understand brain function and also delve out some therapeutic particles for people with Parkinson's disease," said Ying-hui Chou, the director of Brain Imagining and TMS.

To improve the quality of the MRI experience would be a major step for physicians and patients.

"We are hoping, very quickly, that we can start to see some exciting premiere results and starting to acquire some data from patients," said Chen.

https://www.kgun9.com/news/local-news/ua-creating-faster-more-accurate-mri-technologies

Biogen and C4 Therapeutics Enter into Strategic Collaboration to Discover and Develop Potential New Treatments for Neurological Conditions

January 4, 2019

- C4T’s targeted protein degradation platform provides a novel approach to neuroscience drug discovery and development, complementing Biogen’s broader research and development efforts across multiple modalities

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CAMBRIDGE, Mass. and WATERTOWN, Mass., Jan. 04, 2019 (GLOBE NEWSWIRE) -- Biogen Inc(Nasdaq: BIIB) and C4 Therapeutics (C4T) announced today that they have entered into a strategic collaboration to investigate the use of C4T’s novel protein degradation platform to discover and develop potential new treatments for neurological conditions, such as Alzheimer’s disease and Parkinson’s disease.

Under the agreement, C4T will provide expertise and research services in targeted protein degradation and Biogen will provide neuroscience expertise and drug development capabilities. Biogen and C4T will research potential targets together and Biogen will advance candidates for development and potential commercialization. Biogen will pay C4T up to a total of $415 million in upfront and potential future milestone payments plus potential future royalties. Biogen expects to record a research and development expense of $15 million to $25 million in the fourth quarter of 2018 related to this transaction.

“C4T’s platform enables the discovery of novel molecules that take advantage of endogenous protein degradation mechanisms to target disease-causing proteins,” said Michael Ehlers, M.D., Ph.D., executive vice president, research and development at Biogen. “This new collaboration with C4T complements our broader research strategy to develop potential therapies for neurological conditions across multiple modalities. We look forward to discovering new potential therapeutic options for diseases that currently have limited-to-no treatment options available.”

“We are excited to work with our Biogen colleagues to take on the challenge of researching new potential therapies for Alzheimer’s disease, Parkinson’s disease and other devastating neurological diseases,” said Andy Phillips, president and chief executive officer of C4T. “Our approach of using the cell’s innate mechanisms to eliminate specific, disease-causing proteins is a promising new way to tackle the challenges of central nervous system diseases. Together with Biogen, a global leader in neuroscience, we are eager to embark on this important effort.”

About Biogen At Biogen, our mission is clear: we are pioneers in neuroscience. Biogen discovers, develops and delivers worldwide innovative therapies for people living with serious neurological and neurodegenerative diseases. One of the world’s first global biotechnology companies, Biogen was founded in 1978 by Charles Weissmann, Heinz Schaller, Kenneth Murray and Nobel Prize winners Walter Gilbert and Phillip Sharp, and today has the leading portfolio of medicines to treat multiple sclerosis, has introduced the first and only approved treatment for spinal muscular atrophy and is focused on advancing neuroscience research programs in Alzheimer’s disease and dementia, multiple sclerosis and neuroimmunology, movement disorders, neuromuscular disorders, pain, ophthalmology, neuropsychiatry and acute neurology. Biogen also manufactures and commercializes biosimilars of advanced biologics.

We routinely post information that may be important to investors on our website at www.biogen.com. To learn more, please visit www.biogen.com and follow us on social media – Twitter, LinkedIn, Facebook, YouTube.

About C4 TherapeuticsC4 Therapeutics (C4T) is pioneering a new class of small-molecule drugs that selectively target disease-relevant proteins for degradation using the innate machinery of the cell. This targeted protein degradation approach has the potential to treat a range of diseases and offers advantages over traditional drugs, such as potential to minimize drug resistance, de-risked starting points, high potency and specificity. To learn more about C4 Therapeutics, visit www.C4Therapeutics.com.

Biogen Safe Harbor Statement This news release contains forward-looking statements, including statements made pursuant to the safe harbor provisions of the Private Securities Litigation Reform Act of 1995, relating to the potential benefits and results that may be achieved through Biogen’s collaboration with C4 Therapeutics; risks and uncertainties associated with drug development and commercialization; the potential of Biogen’s commercial business and pipeline programs, including potential therapeutic candidates for the treatment of neurological conditions, including Alzheimer’s disease, Parkinson’s disease and additional neurological disorders; and our future financial and operating results. These forward-looking statements may be accompanied by words such as “aim,” “anticipate,” “believe,” “could,” “estimate,” “expect,” “forecast,” “intend,” “may,” “plan,” “potential,” “possible,” “will” and other words and terms of similar meaning. Drug development and commercialization involve a high degree of risk, and only a small number of research and development programs result in commercialization of a product. Results in early stage clinical trials may not be indicative of full results or results from later stage or larger scale clinical trials and do not ensure regulatory approval. You should not place undue reliance on these statements or the scientific data presented.

These statements involve risks and uncertainties that could cause actual results to differ materially from those reflected in such statements, including without limitation, uncertainty as to whether the anticipated benefits and potential of Biogen’s collaboration with C4 Therapeutics can be achieved; risks of unexpected costs or delays; uncertainty of success in the development and potential commercialization of potential therapeutic candidates for the treatment of neurological conditions, including Alzheimer’s disease, Parkinson’s disease and additional neurological disorders, which may be impacted by, among other things, the occurrence of adverse safety events and/or unexpected concerns that may arise from additional data or analysis; regulatory authorities may require additional information or further studies, or may fail to approve or may delay approval of these drug candidates; Biogen and C4 Therapeutics may encounter other unexpected hurdles which may be impacted by, among other things, the occurrence of adverse safety events, failure to obtain regulatory approvals in certain jurisdictions, or failure to protect intellectual property and other proprietary rights; product liability claims; or third party collaboration risks. 

The foregoing sets forth many, but not all, of the factors that could cause actual results to differ from Biogen’s expectations in any forward-looking statement. Investors should consider this cautionary statement, as well as the risk factors identified in Biogen’s most recent annual or quarterly report and in other reports Biogen has filed with the Securities and Exchange Commission. These statements are based on Biogen’s current beliefs and expectations and speak only as of the date of this news release. Biogen does not undertake any obligation to publicly update any forward-looking statements, whether as a result of new information, future developments or otherwise.

BIOGEN MEDIA CONTACT: BIOGEN INVESTOR CONTACT: David Caouette +1 617 679 4945 Mike Hencke public.affairs@biogen.com +1 781 464 2442 IR@biogen.com C4 THERAPEUTICS MEDIA CONTACTS: Kari Watson +1 781 235 3060 kwatson@macbiocom.com Kara Mazey +1 781 235 3060 kmazey@macbiocom.com

https://apnews.com/bf2d1ba28c82fdf5962ac11685d5003b

A New Year’s Resolution: Quiet the Old Tapes

 JANUARY 4, 2019 BY DR. C IN COLUMNS

In my column about time management, I mentioned a nagging inner voice saying, “You did not get enough done today.” That phrase ties to an old “tape,” inner dialogue left by the voices of parents and childhood teachers that says, “You are never going to amount to anything. You are a bad person.” The inner drive to continually produce is an effort on my part to quiet down this old tape. But with Parkinson’s (and getting older) the cost of this nagging inner dialogue has become too much. My New Year’s resolution is to dull this inner dialogue’s noise and intrusion.

The inner drive to always be doing something, to be productive, is also tied to identity. During the holidays, friends and family often inquire, “What have you been doing?” Doingis connected to how we describe ourselves to others, to a sense of our own identity. Parkinson’s disease (PD) consumes the time necessary for doing things that connect to identity. The sense of self begins to shift and the old tapes, once silenced by a healthily productive life, are emboldened by the disease.

Everyone has old tapes tied to memories, some more intense than others. My New Year’s resolution focuses on my most annoying tape because it damages my self-identity and it’s hard to find the self I knew before my Parkinson’s battle. Since I can’t find, feel, know, or sense my old self in the way I once did, there is an emptiness. Part of how I knew myself seems absent, and that emptiness gets filled with the noise from the old tapes. I can’t use “doing” as a functional way to address my identity anymore, so it is my New Year’s resolution to find a better way.

The search for self in the midst of PD is a winding path through the forest of symptoms and steps taken to embrace a high quality of life. It is a forest path filled with obstacles, and it can become one’s self-identity. But there is a difference between saying, “There stands that Parkinson’s guy,” and saying, “There stands Dr. C. He has Parkinson’s.” It may seem like a subtle difference, but it is important because linking one’s self-identity too closely with the disease also creates a link to negative self-dialogue: “You are a diseased person.” That raises the volume of the old tape.

The disease should never become our identity, but given how much time is spent on Parkinson’s and how much conversation is focused on it, it is difficult not to become the disease. The cognitive aspects of PD also make it harder to stay in touch with healthy self-identity. Who am I? How do others view me now that I have this disease? Answers to these two questions help me to keep in touch with the Dr. C alternate identity I have developed and strengthened over four decades. Yes, this self-identity includes PD, but it is something that has happened to me rather than something I have become. Also, replacing negative internal dialogue with positive internal dialogue has been a regular practice, though it seems a bit harder these days.

This New Year’s resolution is sent to me, to Dr. C, who is struggling to sit with a healthy sense of self. It is a resolution wish sent along with a lightness, a gentle touch. It is sent with hope, kindness, and an infinite well of patience. I share the same resolution with all those who read this column along with compassionate blessings for your new year.

Do you have old tapes that interfere in your life?

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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/2019/01/04/parkinsons-identity-insecurities-beat-2019/

Silver Lake Places A Big Bet On Life Sciences With $1B Investment In Verily

 Mary Ann Azevedo   January 4, 2018

Verily, the life science arm of Alphabet, has raised $1 billion in a mega-round led by Silver Lake Partners. The private equity giant took a stake in Verily as part of the funding, according to the company.

Other new investors in the round include Ontario Teachers’ Pension Plan and other unnamed global investment management firms, according to a press release issued Thursday afternoon by Verily.

Also as part of the financing, Alphabet CFO Ruth Porat and Egon Durban, managing partner and managing director of Silver Lake, will join Verily’s operating board.

The funding brings South San Francisco-based Verily’s total raised to $1.8 billion, according to its Crunchbase profile. Its last raise was in January 2017 when Singapore’s Temasek put $800 million in the company formerly known as Google Life.

In the release, Verily CEO Andrew Conrad said the money will be used to “support growth in key strategic areas, including investments in strategic partnerships, global business development opportunities, and potential acquisitions.” The company declined to provide further details.

Verily is “creating the building blocks for broadly useful health platforms, starting with targeted efforts in diseases that affect large populations such as diabetes,” according to Carolyn Wang, head of communications for the firm. Among its initiatives is the launch of Onduo, a joint venture with Sanofi that offers a virtual care platform with novel technology for people with Type 2 diabetes, according to Wang. Verily also has been collaborating with Dexcom to develop the world’s smallest continuous glucose meter for people with diabetes. 

Besides diabetes, the 700-person company is focused on addressing a variety of conditions such as deteriorating vision, multiple sclerosis, and Parkinson’s disease. It also is working on disease detection. It recently announced it would have to halt work on its glucose monitoring, smart contact lens project due to difficulty in gathering accurate results from human tears.

The life science sector is not for the faint of heart, or for those who lack patience, due to its long cycles and risks for failure. But clearly, investors are willing to place bets in the sector. In December, Jason Rowley and I wrote about how Moderna Therapeutics’ IPO was expected to start trading in what is being touted as one the largest U.S. biotech IPOs ever.

https://news.crunchbase.com/news/silver-lake-places-a-big-bet-on-life-sciences-with-1b-investment-in-verily/

Fungi cause brain infection and impair memory in mice

 January 4, 2019, Baylor College of Medicine

Candida albicans. Credit: Wikipedia.

Fungal infections are emerging as a major medical challenge, and a team led by researchers at Baylor College of Medicine has developed a mouse model to study the short-term consequences of fungal infection in the brain.

The researchers report in the journal Nature Communications the unexpected finding that the common yeast Candida albicans, a type of fungus, can cross the blood-brain barrier and trigger an inflammatory response that results in the formation of granuloma-type structures and temporary mild memory impairments in mice. Interestingly, the granulomas share features with plaques found in Alzheimer's disease, supporting future studies on the long-term neurological consequences of sustained C. albicans infection.

"An increasing number of clinical observations by us and other groups indicates that fungi are becoming a more common cause of upper airway allergic diseases such as asthma, as well as other conditions such as sepsis, a potentially life-threatening disease caused by the body's response to an infection," said corresponding author Dr. David B. Corry, professor of medicine-immunology, allergy and rheumatology and Fulbright Endowed Chair in Pathology at Baylor College of Medicine.

Importantly, explains Corry, fungal infections causing airway allergic diseases and sepsis have been associated with increased risk for dementia later.

"These observations led us to investigate the possibility that fungus might produce a brain infection and, if so, the consequences of having that kind of infection," said Corry, who also is a member of the Dan L Duncan Comprehensive Cancer Center.

The researchers began their investigation by developing a mouse model of a low-grade fungus infection with the common yeast C. albicans that would not cause severe disease, but might carry implications for brain function. They tested several doses and finally settled on one dose of 25,000 yeasts.

They injected C. albicans into the blood stream of mice and were surprised to discover that the yeast can cross the blood-brain barrier, a robust protective mechanism the brain employs to exclude all kinds of large and small molecules, as well as a number of microorganisms that can potentially damage the brain.

"We thought that yeast would not enter the brain, but it does," Corry said. "In the brain, the yeast triggered the activity of microglia, a resident type of immune cell. The cells became very active 'eating and digesting' the yeast. They also produced a number of molecules that mediated an inflammatory response leading to the capture of the yeasts inside a granule-type structure inside the brain. We called it fungus-induced glial granuloma, or FIGG."

Corry and his colleagues also tested the animals' memory in both yeast-infected and non-infected mice. They found that infected mice had impaired spatial memory, which reversed when the infection cleared.

The mice cleared the yeast infection in about 10 days; however, the microglia remained active and the FIGGs persisted well past this point, out to at least day 21. Intriguingly, as the FIGGs formed, amyloid precursor proteins accumulated within the periphery and amyloid beta molecules built up around yeast cells captured at the center of FIGGs. These amyloid molecules are typically found in plaques that are the trademark of Alzheimer's disease.

"These findings suggest that the role fungi play in human illness potentially goes well beyond allergic airway disease or sepsis," Corry said. "The results prompted us to consider the possibility that in some cases, fungi also could be involved in the development of chronic neurodegenerative disorders, such as Alzheimer's, Parkinson's and multiple sclerosis. We are currently exploring this possibility." 

"For these reasons, if we better understand how our immune system deals with this kind of constant threat and what are the weaknesses in our immunological armor that occur with aging that allow fungal disease to take root, then we would likely increases the possibility of finding ways to fight back, " Corry said.

More information: Yifan Wu et al, Microglia and amyloid precursor protein coordinate control of transient Candida cerebritis with memory deficits, Nature Communications (2018).  DOI: 10.1038/s41467-018-07991-4

Journal reference: Nature Communications

Provided by: Baylor College of Medicine 

https://medicalxpress.com/news/2019-01-fungi-brain-infection-impair-memory.html

Step up for Parkinson’s: getting people moving in Malta

IN MY COUNTRY  Author: Natalie Muschamp Published: 2 January 2019

Natalie Muschamp is the founder of Step up for Parkinson’s, a Maltese organisation that provides free dance therapy classes for people with Parkinson’s and their carers. 

In the latest in our ‘In my country’ series, she tells us how, having found her “calling”, she tackles the stigma around Parkinson’s – and why her classes will always be free of charge

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My aunt’s partner had been suffering from Parkinson’s for years and eventually passed away. I was young at the time, so I didn’t really know what was happening, but seeing my aunt in such distress was frightening. I came to understand the caregivers’ side of Parkinson’s – and the impact it can have on you as a person.

I went back to school in Malta as a mature student and decided I wanted to use dance to help people living with Parkinson’s. One of my tutors sent me a link to Dance for Parkinson’s in New York, US, and that was it – I’d found my calling. From then on, I dedicated everything to Parkinson’s. I trained in New York and did another course with Dance for Parkinson’s and the English National Ballet in the UK.

Tackling stigma

Step up for Parkinson’s was born in 2017, after I managed to get funding from Maltese charities the Malta Community Chest Fund and later, the Social Impact Awards. When we started – with 15 participants – there was only one other Parkinson’s support group in the whole of the country.

Early on we faced a lot of challenges. There was very little known about Parkinson’s and the stigma around the condition was huge. It was also impossible to get men to come to dance classes, so I had to brand it as ‘creative movement therapy’. When we started, participants wouldn’t let me take photos because they didn’t want people to know they had Parkinson’s.

There isn’t just stigma around Parkinson’s in Malta but around disability in general. It’s not like we have disability friendly buildings everywhere – breaking down those stigmas is hard.

Now, two years later, we have 152 members in six locations, 11 trainers, and ambassadors for the organisation appearing on TV and radio. People are becoming more open about having Parkinson’s. Because we’ve grown so fast, it’s vital we get more funding to pay our trainers. We provide a free service, but we pay our trainers because they are all either dancers or practitioners.

It’s a constant struggle trying to achieve financial sustainability. We’re not selling anything, we’re not making any capital – but that’s the choice I made. I refuse to charge people and the beauty of the classes being free is that we have people from all backgrounds taking part. By making the classes free, we are integrating the whole community.

The arts as therapy

I want people in the international Parkinson’s community to take the arts as a therapy more seriously. It’s been proven to help. People with Parkinson’s often lose their expressions – in their faces and sometimes in their voices – so these classes are an opportunity to regain that expression and creativity, as well as to practice breathing and mindfulness techniques.

It’s worth remembering that you don’t get Parkinson’s alone. If the person with Parkinson’s feels better – their caregivers or family members feel better. It gives what we do double the purpose. I think we need to tap into the arts to treat mental illnesses too – and most importantly, I think they should always be free.

I knew Step up for Parkinson’s was doing well when the head of the neurology department at the Mater Dei Hospital, Malta, endorsed us, and my participants’ doctors told them they didn’t need to double their dose – they ‘just needed to keep dancing with Natalie’. That is a success.

Eventually, our aims for the organisation are to become a part of the national health system in Malta, to extend our therapies to other conditions like rheumatism and MS and continue to raise awareness around Parkinson’s.

For more information on dance movement therapy and Parkinson’s please visit the EPDA website: https://epda.eu.com

https://parkinsonslife.eu/step-up-for-parkinsons-malta/?fbclid=IwAR3PPNoOsfLcn5Pn4hk2fqofrkpMt6KpwdS9E7gV2IIcA8C01aTmKMtXVqk