World Parkinson’s Disease Awareness Day 2024

World Parkinson’s Disease Awareness Day Program 2024

Date: April 6th, 2024
Time: 8am to 1 pm (Patient awareness program starts at 10am)
Venue: Centre for Brain Research, Indian Institute of Science, Bangalore

Join Us for a Day of Awareness and Understanding

We are thrilled to invite you to the World Parkinson’s Disease Awareness Program (Official World Parkinson’s Disease Day is on April 11th Annually), an enlightening event dedicated to shedding light on Parkinson’s Disease and its impact on individuals and communities. Hosted at the prestigious Centre for Brain Research, Indian Institute of Science, Bangalore, this program promises to be an enriching experience for all.

What to Expect:

– Informative Talks: Delve into the world of Parkinson’s Disease with insightful talks by medical experts. Learn about the latest advancements in research and treatment options.

– Patient Perspectives: Hear firsthand accounts from individuals living with Parkinson’s Disease. Gain valuable insights into their experiences, challenges, and triumphs.

– Panel Discussions: Engage in thought-provoking discussions on various aspects of Parkinson’s Disease. Explore topics ranging from symptom management to caregiver support.

– Networking Opportunities: Connect with fellow attendees, including scientists, researchers, healthcare providers, patients, caregivers, and members of the general public. Share knowledge, experiences, and resources.


Participation in the World Parkinson’s Disease Awareness Program is free and open to all. However, registration is required to ensure a seamless experience for everyone. Reserve your spot today by completing the registration form  –

Date and Venue:

Mark your calendars for April 6th and join us at the Centre for Brain Research, Indian Institute of Science, Bangalore. Together, let’s raise awareness, foster understanding, and support those affected by Parkinson’s Disease.

Spread the Word:

Help us reach more people by sharing this event with your friends, family, colleagues, and networks. Together, we can make a difference in the lives of individuals living with Parkinson’s Disease.

Contact Us:

For inquiries or further information, please contact – 7026603300 and ask about the program information

We look forward to welcoming you to this impactful event! – World Parkinson’s Disease Awareness Day 2024

Register Here

Program Details

Academic session

Time Topic Speaker
07:45 AM – 08:00 AM Registration
08:00 AM – 08: 20 AM Animal Models in Parkinson’s Disease Dr. Latha Diwakar, Centre for Brain Research, Bangalore
08:20 AM – 08:40 AM Biomarkers in Parkinson’s Disease Dr Albert Stezin, Centre for Brain Research, Bangalore
08:40 AM – 09:00 AM Parkinson’s Genetics in India Dr. Shweta Ramdas, Centre for Brain Research Bangalore
09:00 AM – 09:20 AM Autophagy and Movement Disorders Dr. Ravi Manjithaya, Jawaharlal Nehru centre for Advanced Scientific Research, Bangalore
09:20 AM – 09:40 AM Parkinson’s Disease Current Research in India Dr Phalguni Alladi, NIMHANS, Bangalore
09:40 AM – 10:00 AM What can we do in India on Parkinson’s / Neurodegeneration research in near future Dr. Ramprasad VL, Medgenome Labs, Bangalore
10:00 AM – 10:15 AM Coffee Break

Academic Session Video Recording

Patients and Caregiver Session

Time Topic Speaker
10:15 AM – 12:00 PM Patients and Caregivers Session
Current Advances in Therapies for Parkinson’s Dr Anish Mehta Associate ProfessorConsultant NeurologistPDF in Movement Disorders Ramaiah Medical College and Hospitals
What can be the future of PD treatment Dr. Srinivas Raju, Consultant Neurologist, Manipal Hospital Hebbal, Bangalore
Speech and Swallowing Therapy – Role in Parkinson Disease management Dr N Shivashankar Sr. Consultant, Speech Pathology and Audiology, Apollo Specialty Hospital, Jayanagar, Bangalore Adjunct Professor, Nitte Institute of speech and hearing, Mangalore. Retd. Professor and Associate Dean, NIMHANS, Bangalore
Brain Donations and Role in research and therapy Dr. Anita Mahadevan, Prof. & HOD, Neuropathology Department, NIMHANS
CBR and it’s Vision Dr. K V S Hari, Director, Centre for Brain Research, IISc, Bangalore
Panel Discussion – Interactions for research and Patient collaborations Dr. Ravi Muddashetty, Dr. Ravi Manjithya, Dr. Ramprasad VL
12:00 PM – 1:30 PM Patient Experiences
How to cope with Parkinson’s Disease Prof. Mahadevan, IIsc Faculty & PwP
Young onset Parkinson’ disease – How i came over the hurdles Harish Kulkarni, Senior Manager, Capegemini, India & PWP
How to plan yourself when you have Parkinson’s disease Geetha R, Health CoordinatorPeople’s Health Movement National Trainer for Adolescent Health Consultant Women’s and Children’s Health & PwP
Women and Young Onset Parkinson’s Disease Dr Prathima Kadiyala, MRCP(UK) ,Diploma in Dermatology, (UK) General physician and skin care Tirupati & PwP
1:00 PM – 1:30PM Question and Answers
13:30 – 14:00 Lunch and Validection

Patients and General Public Session Video Recording


For Scientific Session and Public Awareness Session

Dr Shivashankar

Dr Shivashankar

Dr N Shivashankar
Sr. Consultant, Speech Pathology and Audiology, Apollo Specialty Hospital, Jayanagar, Bangalore
Adjunct Professor, Nitte Institute of speech and hearing, Mangalore.
Retd. Professor and Associate Dean, NIMHANS, Bangalore

Geetha R, PwP & Health Co-ordinator

Geetha R

Geetha R

Health Coordinator

People’s Health Movement

National Trainer for Adolescent Health

ConsultantWomen’s and Children’s Health

Harish Kulkarni, IT professional & PwP

Harish Kulkarni

Harish Kulkarni,

Senior Manager, Capegemini, India


Dr. Anish Mehta

Dr. Anish Mehta

Dr Anish Mehta
Associate Professor
Consultant Neurologist
PDF in Movement Disorders
Ramaiah Medical College and Hospitals

Dr Latha Diwakar

Dr. Latha Diwakar

Dr Latha Diwakar

Senior Scientific Officer

Centre for Brain Research, IISc, Bangalore.

Dr. Albert Stezin

Dr. Albert Stezin

Dr. Albert Stezin

Scientific officer,

Centre for Brain Research, IISc, Bangalore

Dr. Ramprasad VL

Dr Ramprasad VL

Dr. Ramprasad VL

CEO and Principal Scientist

Medgenome Labs Pvt Ltd, Bangalore, India

Dr Srinivas Raju

Dr Srinivas Raju

Dr Srinivas Raju

Consultant Neurologist,

Manipal Hospital, Hebbal, Bangalore

Dr. Ravi Muddashetty

Dr Ravi Muddashetty

Dr. Ravi Muddashetty

Centre for Brain Research, IISc, Bangalore

Dr Ravi Manjithaya

Dr Ravi Manjithaya

Dr. Ravi Manjithaya

Neurosciences Chair

Jawaharlal Nehru Centre for Advanced Scientific Research (JNCASR)

Bangalore, India

Dr Anita Mahadevan

Dr Anita Mahadevan

Dr Anita Mahadevan

Prof. & Head – Department of Neuropathology,

In-charge – Human Brain Bank, NIMHANS

NIMHANS, Bangalore, India

Dr Prathima Kadiyala, PwP

Dr Prathima Kadiyala

Dr Prathima Kadiyala, PwP

MRCP(UK), Dipoloma in Dermatology,(UK) General physician and skin care

Tirupati & P

Dr Phalguni Alladi

Dr Phalguni Alladi

Dr. Phalguni Alladi

Department of Clinical Psychoparmacology and Neurophysiology

NIMHANS, Bangalore, India

Dr Mahadevan, Pwp

Dr Mahadevan

Dr Mahadevan, Pwp

IISc, Bangalore

Prof. KVS Hari

Prof. KVS Hari

Prof. KVS Hari

Director, Centre for Brain Research, IISc, Bangalore

Event Co-ordinators

Patient / Care Giver / Public co-ordinators: Mr. Rajiv Gupta, Dr. Prathima Kadiyala, Mr. Gokul Casheekar, Dr. Rosy Neupane, Mr. Punit, Mrs. Anjali

Scientific Co-ordinators:  Dr. Ravi Muddashetty, Dr. Ravi Manjithaya, Dr. Prashanth LK, Dr. Guruprasad, Dr. Kuldeep Shetty, Dr. Srinivas Raju

Supported By

Program Recordings

Women and YOPD

YOPD : How to Manage the Hurdles

Women and YOPD : Personal Thoughts

Address by Prof. Hari, Director, Centre for Brain Research

Animal Models in Parkinson's Disease

Women and YOPD


Unveiling the Groundbreaking Solution for Parkinson’s Freezing of Gait

Parkinson’s disease affects over 9 million people worldwide and causes “freezing of gait,” which is one of the most debilitating symptoms. Recent research from the Harvard John A. Paulson School of Engineering and Applied Sciences and the Boston University Sargent College of Health & Rehabilitation Sciences has developed a soft, wearable robot that gently assists the wearer’s hip movement, enabling longer strides and eliminating freezing episodes indoors. The wearable garment uses cable-driven actuators and sensors, generating assistive moments in concert with biological muscles. The device’s impact was immediate, and the participant was able to walk without freezing indoors, and even outdoors, he experienced only occasional episodes. The device has the potential to deepen our understanding of gait freezing, a phenomenon that remains poorly understood. This soft robotic device offers a ray of hope for Parkinson’s patients worldwide, paving the way for further research into soft robotics and their potential to improve the lives of individuals grappling with this debilitating disease.

The study titled “Soft robotic apparel to avert freezing of gait in Parkinson’s disease” has been published in Nature Medicine (January 2024). The key findings of the study include:

  1. The soft robotic garment gently assists the wearer’s hip movement, enabling longer strides and eliminating freezing episodes indoors.
  2. The device’s impact was immediate, and the participant was able to walk without freezing indoors, and even outdoors, he experienced only occasional episodes.
  3. The study involved a 73-year-old man with Parkinson’s disease, who, despite undergoing surgical and pharmacologic treatments, experienced frequent and debilitating freezing episodes, leading to frequent falls and reduced mobility.
  4. The device’s sensors collected motion data and generated assistive forces in sync with muscle movement, effectively reducing freezing episodes.
  5. The study’s results offer a ray of hope for Parkinson’s patients worldwide, paving the way for further research into soft robotics and their potential to improve the lives of individuals grappling with this debilitating disease.

These findings support the potential of soft robotic devices in addressing the challenges faced by Parkinson’s patients, particularly in mitigating the effects of freezing of gait.

What is Freezing of Gait?

Freezing of gait is a common, disabling symptom of Parkinson’s disease (PD), but the mechanisms and treatments of FOG remain great challenges for clinicians and researchers. Freezing of gait (FOG) is defined as a brief, episodic absence or marked reduction of forward progression of the feet despite the intention to walk. During a freezing episode, a person with PD may feel like their feet are stuck in place, or glue to the ground. Freezing may also affect other parts of the body or speech. Some people are more likely to have freezing episodes than others. Freezing may occur when the person with PD is due for the next dose of dopaminergic medications. This is called “off” freezing — usually, until compensation strategies such as cueing is provided.

FOG is one of the most disabling yet poorly understood symptoms of Parkinson’s disease (PD). FoG is an episodic gait pattern characterized by the inability to step that occurs on initiation or particularly with perception of tight surroundings. This phenomenon impairs balance, increases falls, and reduces the quality of life. The exact cause of FOG is not known, but it is thought to be related to the degeneration of the basal ganglia, which is responsible for controlling movement.

FOG is not unique to PD and can also occur in other neurological conditions, such as, Higher Gait Disorders (HGD), multiple system atrophy (MSA), progressive supranuclear palsy (PSP), and corticobasal degeneration.

There are several treatment options for FOG, including pharmacological, surgical, and behavioral therapies. Pharmacological treatments include levodopa, dopamine agonists, and monoamine oxidase inhibitors. Surgical treatments include deep brain stimulation (DBS) and lesioning of the subthalamic nucleus (STN) or globus pallidus internus (GPi) with variable / suboptimal benefits for exclusive FOG. Behavioral therapies include cueing, which involves providing visual or auditory cues to help the patient initiate movement, and physical therapy, which can help improve balance and gait.

In recent years, researchers have developed a soft, wearable robot designed to combat freezing of gait in Parkinson’s patients. Worn around the hips and thighs, this innovative robotic garment gently assists the wearer’s hip movement, enabling longer strides and eliminating freezing episodes indoors. The device’s sensors collected motion data and generated assistive forces in sync with muscle movement, effectively reducing freezing episodes. The device’s impact was immediate, and the participant was able to walk without freezing indoors, and even outdoors, he experienced only occasional episodes.

In conclusion, FOG is a common and debilitating symptom of Parkinson’s disease that can also occur in other neurological conditions. The exact cause of FOG is not known, but it is thought to be related to the degeneration of the basal ganglia. There are several treatment options for FOG, including pharmacological, surgical, and behavioral therapies. Recent research has also shown promising results with a soft, wearable robot designed to combat freezing of gait in Parkinson’s patients.



Michael J Fox’s Fight Against Parkinson’s: Supporting Research and Awareness

The documentary “Still: A Michael J. Fox Movie” provides an affecting portrait of the beloved actor and advocate, exploring his personal and professional triumphs and travails, particularly his journey with Parkinson’s disease. The film delves into Fox’s life, from his early career and success in iconic 80s hits like “Back to the Future” and “Family Ties,” to his public revelation of his Parkinson’s diagnosis in 1998, a condition he had kept secret for seven years. The documentary includes dramatic reconstructions, interviews with Fox, and glimpses into his daily life with his family and personal trainer. It portrays Fox as a thoroughly likable man, without self-pity, and highlights his natural upbeat style as a survival mechanism. The film has been praised for its well-balanced and thought-provoking approach, offering a new storytelling format that effectively communicates the heart of Fox’s story, filling the audience with both sadness and hope. The documentary is available for streaming on Apple TV+ and has been nominated for seven Emmy Awards, including Outstanding Documentary

By watching “Still: A Michael J. Fox Movie,” you’ll gain a deeper understanding of the challenges faced by those living with Parkinson’s disease and learn about the ongoing efforts to find a cure. The documentary serves as a powerful reminder of the importance of awareness, research, and support in the fight against this debilitating condition.

“Still: A Michael J. Fox Movie” has received several accolades and awards, including the following:

  1. Critics’ Choice Documentary Awards: The film won five prizes at the Critics’ Choice Documentary Awards, including Best Feature and Best Director.
  2. Other Awards: The documentary also won Outstanding Sound Design and has been recognized for achievement in documentaries.

The film’s success at the Critics’ Choice Documentary Awards and its recognition for various aspects of its production highlight its exceptional quality and impact.

What is Michael J Fox Foundation

The Michael J. Fox Foundation for Parkinson’s Research, founded in 2000 by Michael J. Fox, is dedicated to finding a cure for Parkinson’s disease through an aggressively funded research agenda and ensuring the development of improved therapies for people living with the condition. The foundation has become the largest non-profit funder of Parkinson’s disease research in the world, with more than $1 billion of research projects to date.

Works of the Michael J. Fox Foundation:

  1. Research Funding: The foundation focuses on funding research to find a cure for Parkinson’s disease and develop improved therapies for those affected by the condition.
  2. Clinical Studies: In 2010, the foundation launched the first large-scale clinical study on evolution biomarkers of the disease, which has led to ground breaking research and a better understanding of the condition.
  3. Living with Parkinson’s: The foundation’s online source for information on Parkinson’s disease includes guides for the newly diagnosed and caregivers, stories from people living with the disease, and additional resources.
  4. Awareness and Advocacy: The foundation has raised awareness for Parkinson’s disease through various initiatives, such as the Nike raffle in 2016, which raised $6.75 million for the cause.
  5. Collaboration: The Michael J. Fox Foundation collaborates with other organizations and researchers to advance the understanding and treatment of Parkinson’s disease.

The foundation’s efforts have led to significant progress in Parkinson’s research, including the discovery of a biomarker for the disease, which has increased hope for a cure in the future[2]. Michael J. Fox’s personal journey with Parkinson’s disease and his advocacy work through the foundation have raised awareness and funds for research, making a significant impact on the lives of those affected by the condition.

Apple TV + Documentary source

Click Here to Watch the Full Documentary


Unlocking India’s Genetic Code: Revelations and Challenges in Parkinson’s Disease Research

Charting Unexplored Terrain: The Genetic Landscape of Parkinson’s Disease in India. In a groundbreaking publication titled ‘The Genetic Drivers of Juvenile, Young, and Early-Onset Parkinson’s Disease in India,’ a pioneering Indian research group fills a crucial void in our understanding, shedding light on the elusive genetic factors driving Parkinson’s disease within the Indian population.   The article is published in leading Movement Disorders Journal which is well read across globally.

This is a first of a kind study conducted in India aimed to initiate a population-based genetic screening of Young Onset Parkinson’s disease (YOPD) in Indian population. The Genetics of PAN-India Young Onset Parkinson Disease (GOPI-YOPD), a multicentre Pan India project- recruited 1000 patients through a network of 10 specialty Movement Disorder Centers/Neurology clinics across India. The genomic analysis was done at MedGenome Labs.

``Parkinson's disease is a common neurological disorder causing tremors, slowness of movements, stiffness and walking difficulties in most. It is caused by a complex interaction between external environmental and familial or genetic factors. This study gives a much needed insights into the Indian genetics to the bigger puzzle of Parkinson's Disease``
Prof. Rupam Borgohain
Secretary, Parkinson's Research Alliance of India (PRAI)
“MedGenome has always been at the forefront of equipping clinicians and patients with the latest and most innovative tools in healthcare by leveraging the power of genomics. With the increased focus on personalised medicine, using risk screening tools such as Polygenic Risk Score (PRS) will enable us to predict an individual's genetic liability to rare and inherited diseases much in advance before the symptoms start appearing. With these findings, we aim to offer a prognostic value to clinicians while catering to the need of a systematic genetic evaluations for timely prevention and management of several diseases.
Dr Ramprasad VL
CEO & Chief Scientist, Medgenome Labs Private Limited
Prashanth LK
``a first of its kind- India wide registry of Young Onset Parkinsons Disease (disease starting at age less than 50 years) was started by PRAI and resulted in insights into clinical and genetic aspects of Indian patients. Parkinson’s disease with onset less than 20 years (juvenile PD), 20-40 years (young onset PD) and 40-50 years (early onset PD) have different clinical features. The role of genetic factors seems to be higher in these patients compared to older age and this collaborative project of PRAI with MedGenome has identified unique genetic fingerprints in Indian patients.”
Dr Prashanth LK
Principal Investigator, Genetics of Parkinon in India : Young Onset Parkinsons Disease (GOPI-YOPD)

Critical Findings in the article:

The study focused on individuals with young-onset Parkinson’s disease (YOPD) and early-onset Parkinson’s disease (EOPD) in India. YOPD was defined as age of onset (AoO) ≤40, while EOPD was defined as 40 < AoO ≤ 50. The study aimed to understand the genetic drivers of PD in these specific age groups.  The main findings of the study regarding the genetic drivers of Parkinson’s disease in India are as follows:

  1. Rare variants in more than 20 genes were identified as causal for Parkinson’s disease.
  2. The study identified 90 independent risk loci associated with Parkinson’s disease through a genome-wide association study (GWAS).
  3. The study focused on a South Asian population, filling the gap in understanding Parkinson’s disease genetics outside of European populations.
  4. The study had a sample size of approximately 2000 patients and controls, limiting the statistical power of the analyses.
  5. Some of the findings were validated by previous studies in other cohorts or populations, such as the association of the SNCA region with Parkinson’s disease diagnosis.
  6. The study highlighted the need for replication of the findings in additional South Asian Parkinson’s disease cohorts and in cohorts from other populations.

Parkinson Disease Genes Found in this Study:

In the study conducted in India, several pathogenic forms of genes were associated with Parkinson’s disease. The most common pathogenic variant was observed in the PRKN gene, with homozygous deletions being the predominant form. Other pathogenic mutations were found in genes such as PINK1, CHCHD2, VPS13C, ATP13A2, PLA2G6, and PRRT2. Additionally, likely pathogenic mutations were observed in genes like PLA2G6, MAPT, GCH1, PINK1, SYNJ1, and WDR45. The GBA1 gene mutations were also frequently observed in the cohort. These findings provide insights into the genetic factors contributing to Parkinson’s disease in the Indian population.

New Discoveries :

Several new genes were discovered in this study on the genetic drivers of Parkinson’s disease in India. The study identified rare variants in more than 20 genes that are considered causal for Parkinson’s disease. However, the specific genes that were discovered in this study are not mentioned in the provided context

Take Home Message and Future Directions based on this study:

The study on the genetic drivers of Parkinson’s disease in India identified several key findings and proposed future directions. Here are the conclusions and future directions based on the study:

  1. Genetic Risk Factors: The study identified both common and rare genetic variants associated with Parkinson’s disease in the South Asian population. It expanded our understanding of the genetic architecture of Parkinson’s disease beyond European populations.
  2. Polygenic Risk: The study found that individuals with pathogenic variants in known Parkinson’s disease genes had a reduced polygenic burden, suggesting that these variants may have a stronger effect on disease risk.
  3. Novel Risk Loci: The study identified a potential association between the BSN gene and Parkinson’s disease in the South Asian population. Further research is needed to validate this finding and understand the functional impact of BSN variants.
  4. Replication and Validation: The study acknowledges the need for replication and validation of the findings in additional South Asian Parkinson’s disease cohorts and in other populations. Larger sample sizes and diverse cohorts will improve the statistical power and generalizability of the results.
  5. Global Parkinson’s Genetics Program (GP2): The study highlights the importance of initiatives like the GP2, which aims to address the knowledge gap in Parkinson’s disease genetics by including diverse populations and promoting equitable personalized medicine.
  6. Future Research: The study suggests that with ongoing efforts in the GP2 and other Parkinson’s disease genetics studies in India, our understanding of Parkinson’s disease genetics in South Asians will significantly increase in the coming years.

In summary, the study provides valuable insights into the genetic drivers of Parkinson’s disease in the South Asian population and emphasizes the need for further research, replication, and validation to enhance our understanding of the disease and improve personalized medicine approaches.

Resource Reference

Andrews, S.V., Prashanth L Kukkle, Menon, R., Geetha, T.S., Goyal, V., Kandadai, R.M., Kumar, H., Borgohain, R., Mukherjee, A., Wadia, P.M., Yadav, R., Desai, S., Kumar, N., Joshi, D., Murugan, S., Biswas, A., Pal, P.K., Oliver, M., Nair, S., Kayalvizhi, A., Samson, P.L., Deshmukh, M., Bassi, A., Sandeep, C., Mandloi, N., Davis, O.B., Roberts, M.A., Leto, D.E., Henry, A.G., Di Paolo, G., Muthane, U., Das, S.K., Peterson, A.S., Sandmann, T., Gupta, R., Ramprasad, V.L. and (2023), The Genetic Drivers of Juvenile, Young, and Early-Onset Parkinson’s Disease in India. Mov Disord.


Navigating Choices: Factors Influencing Deep Brain Stimulation (DBS) Surgery Decisions in Developing Countries – India

What factors contribute to the significant difference in the rate of Deep Brain Stimulation (DBS) surgery for Parkinson’s Disease (PD) between developed and developing countries?  What influences the decision of patients with PD in the developing world to opt for or against Deep Brain Stimulation (DBS) surgery? What are the primary barriers hindering a larger proportion of eligible PD patients in the developing world from undergoing Deep Brain Stimulation (DBS) surgery?  These questions have been addressed in a recently published medical paper from India in the medical journal – Movement Disorders in Clinical Practice.   Let’s see what we as a general population can understand from this article.

Deep Brain Stimulation (DBS) Surgery for Parkinson’s Disease – The Developing World’s (India) Perspective:

  • Study focused on patients with Parkinson’s disease (PD) and motor complications in developing countries (India) spanned over 5 year period (2016-2020) involving 1017 Parkinson’s Disease patients.
  • Among 1017 Parkinson’s Disease people, 223 patients met the medical criteria for consideration of Deep Brain Stimulation (DBS) surgery.
  • Among 223 medically indicated for DBS surgery, Only 35% (78 patients) patients opted for DBS surgery.
  • Among these 78 Patients who opted for surgery, 37 patients were found to be unfit for DBS surgery during the Pre-operative workup and only 41 patients finally underwent DBS Surgery.
  • So in brief, in 1017 patients with Parkinson’s Disease, roughly 22% met the clinical criteria for DBS surgery.  From the whole cohort, 7% opted for DBS surgery and among them, only about 4% were deemed fit and underwent the procedure.

Let’s see what factor played a role in decision making for Deep Brain stimulation Surgery in these patients in India.

Characteristics of Patients Opting for DBS Surgery:


  • Older age: Patients choosing DBS were generally older.
  • Higher socioeconomic status: Those opting for surgery had a higher socioeconomic status.

Disease Duration and Motor Complications:

  • Longer duration of PD: Patients choosing DBS had PD for a longer period.
  • Longer duration of motor fluctuations: Opted-for surgery patients experienced motor fluctuations for an extended time.

Motor Symptoms:

  • More severe motor disability in the OFF state: Severity of motor disability was higher in surgery-opting patients when not on medication.
  • More severe freezing of gait in the OFF state: Patients choosing DBS experienced more severe freezing of gait without medication.

Psychiatric and Cognitive Symptoms:

  • History of hallucinations and psychotic symptoms: Opted-for surgery patients had a higher incidence of these symptoms.
  • Higher burden of cognitive symptoms: Prevalence of cognitive dysfunction was higher in surgery-opting patients.

Correlation Between Socioeconomic Status and Surgical Decisions:

  • Correlation found between higher socioeconomic status and the willingness to undergo DBS surgery.
  • Almost 40% of patients opting for medical management cited financial constraints.

Barriers to DBS Surgery:

Reasons for Not Undergoing Surgery:

  • Financial constraints: 39.3% cited financial limitations.
  • Concerns about risks and complications: 13.1% were hesitant due to surgical concerns.
  • Lack of conviction about benefits: 9% were not convinced about expected benefits.
  • Inadequate family support: 6.9% lacked sufficient family support.

Consideration for Future DBS Surgery:

  • 31.7% of patients opting for medical management kept DBS as an option for future consideration.

Comparison with Western Populations:

  • Difference in DBS surgery rates between Western and developing countries.
  • In India, limited access, insurance coverage, and socioeconomic factors contribute to the low rate (35%).
  • Western countries, with comprehensive health coverage, may have higher rates, but concerns about efficacy and safety still influence decisions.


  • Understanding the complex interplay of socioeconomic, medical, and personal factors crucial for making informed decisions about Deep Brain Stimulation (DBS) surgery in developing countries.
  • Financial constraints, limited insurance, and familial support emerged as significant barriers.
  • Future research and policy considerations should address these barriers to ensure equitable access to DBS surgery in developing regions.
Stigma of Parkinson diseaseAwareness

Stigma in Parkinson Disease : How to overcome it

Stigma of Parkinson disease

What is Stigma in Parkinson Disease? What are the types of Stigma?

Stigma in Parkinson’s disease, like many other chronic medical conditions, is a significant challenge that individuals with the condition and their families face. Stigma can be broadly categorized into seven types, as defined by Link and Phelan in their influential work on the subject. These seven types can help us understand how Parkinson’s disease is stigmatized and the impact it has on those affected.

Public Stigma: This type of stigma involves the negative beliefs, attitudes, and stereotypes held by society at large towards people with Parkinson’s disease. These attitudes can manifest as fear, misunderstanding, or avoidance. Public stigma can make it difficult for individuals with Parkinson’s disease to socialize or access the support they need.

Self-Stigma: Self-stigma refers to the internalization of the negative stereotypes and beliefs that society holds about Parkinson’s disease. People with Parkinson’s may start to believe these stereotypes and feel ashamed or inferior, which can lead to a decrease in self-esteem and overall well-being.

Structural Stigma: Structural stigma pertains to societal and institutional practices that discriminate against or disadvantage people with Parkinson’s disease. This can manifest in healthcare disparities, limited access to quality care, or difficulties in obtaining insurance coverage for treatment and support services.

Affiliated Stigma: Parkinson’s disease doesn’t just affect the individual diagnosed; it also has an impact on their family and caregivers. Affiliated stigma involves the negative attitudes and discrimination experienced by the family members and friends of someone with Parkinson’s. They may face judgment or feel isolated, which can strain their relationships and well-being.

Courtesy Stigma: Individuals who care for or interact with people living with Parkinson’s disease can also face courtesy stigma. This occurs when people are treated unfairly or with disrespect because of their association with someone who has the condition. Healthcare providers, for instance, may experience this form of stigma.

Label Avoidance: Label avoidance stigma refers to individuals’ reluctance to be identified as having Parkinson’s disease due to the negative consequences they anticipate, such as potential discrimination or social rejection. This can lead to people avoiding diagnosis and treatment, which may result in delayed intervention and poorer outcomes.

Perceived Stigma: Perceived stigma is the fear or anticipation of experiencing stigma based on one’s condition. People with Parkinson’s may anticipate discrimination or negative reactions from others, which can lead to anxiety, depression, or reluctance to seek social support.

Addressing stigma in Parkinson’s disease is crucial to improving the lives of those affected. This can be accomplished through a combination of education, awareness campaigns, and policy changes. Increased public understanding and empathy can help reduce public stigma, while empowering individuals with Parkinson’s to share their stories and experiences can combat self-stigma. Moreover, healthcare systems and institutions should work to reduce structural stigma and ensure equitable access to care.

In conclusion, understanding the seven types of stigma in Parkinson’s disease provides a comprehensive framework for addressing the complex challenges faced by individuals with the condition and their loved ones. By actively working to reduce these stigmas, we can create a more inclusive and supportive environment for those living with Parkinson’s disease.

How to overcome Parkinson Disease Stigma?

Stigma in Parkinson

Reducing stigma in Parkinson disease is essential to improving the quality of life for individuals affected by the condition. Stigma can have a profound impact on mental health, social relationships, and access to healthcare. Here are some strategies and approaches to reduce stigma in Parkinson’s disease:

A. Education and Awareness:

Public education campaigns: Conduct public awareness campaigns to provide accurate information about Parkinson’s disease. These campaigns can dispel myths and stereotypes, helping to increase understanding and empathy.
Schools and communities: Introduce educational programs about Parkinson’s disease in schools and local communities. Promoting understanding from a young age can foster a more accepting society.
Media and Representation:

Encourage accurate portrayal: Work with media outlets to ensure that depictions of Parkinson’s in movies, television, and news are accurate and respectful. Avoid sensationalizing the condition or using it for comedic effect.
Highlight positive stories: Share stories of individuals with Parkinson’s who have achieved remarkable accomplishments, demonstrating that the condition doesn’t define their entire life.

B. Open Dialogue:

Support groups: Create and promote support groups where people with Parkinson’s, their caregivers, and family members can share their experiences, challenges, and triumphs. Open dialogue can reduce self-stigma and affiliated stigma.
Personal testimonials: Encourage individuals with Parkinson’s to share their personal stories, either in person or through written or online platforms. Personal narratives can be powerful tools for challenging stereotypes.
Healthcare and Policy:

Equal access to care: Advocate for policies that ensure equitable access to healthcare services, including specialist care, therapies, and medications. Reducing structural stigma in the healthcare system is crucial.
Training for healthcare professionals: Offer training to healthcare providers to help them understand the physical and emotional challenges faced by people with Parkinson’s. This can improve patient-provider relationships and reduce courtesy stigma.

C. Language Matters:

Use person-first language: Encourage the use of person-first language, where the person is emphasized over the condition. Instead of saying “a Parkinson’s patient,” say “a person living with Parkinson’s.”
Avoid derogatory terms: Educate people about the importance of avoiding derogatory or insensitive language that perpetuates stereotypes.

D. Empower Advocacy:

Support advocacy organizations: Join or support organizations that advocate for the rights and well-being of people with Parkinson’s. These organizations often have the resources and platforms to combat stigma effectively.
Political engagement: Engage with policymakers to promote legislation that protects the rights and dignity of individuals living with Parkinson’s disease.
Mental Health Support:

Address the emotional impact: Acknowledge the emotional and psychological challenges associated with Parkinson’s and provide access to mental health support and resources. This can help individuals cope with self-stigma and perceived stigma.

E. Promote Inclusivity:

Encourage social inclusion: Promote social activities and events that are accessible and welcoming to people with Parkinson’s. Inclusive environments help reduce perceived stigma and encourage participation.

Celebrate Achievements:

Recognize achievements: Highlight the accomplishments of individuals living with Parkinson’s, showcasing their resilience and contributions to society.
Reducing stigma in Parkinson’s disease is an ongoing process that involves the collective efforts of individuals, healthcare providers, policymakers, and communities. By fostering understanding and empathy, dispelling misconceptions, and promoting inclusivity, we can create a more accepting and supportive environment for those living with Parkinson’s disease and work towards reducing the stigma in Parkinson disease.

Genetics of Young and early Onset Parkinson's disease from IndiaPublications

The Genetic Drivers of Young and Early Onset Parkinson’s Disease in India

This paper was presented as a part of Late breaking abstract at the Asia Oceanic Parkinson’s and Movement Disorders Congress (AOPMC), held at Kolkata, India.  March 16-19, 2023.  The paper address the current findings of genetics of Young Onset Parkinson Disease (YOPD) from Indian cohort.


Authors : Shan V Andrews1*, Prashanth L Kukkle2,3* , Ramesh Menon4*, Thenral S Geetha4 , Vinay Goyal5,6,7, Rukmini Mridula Kandadai8, Hrishikesh Kumar9, Rupam Borgohain8, Adreesh Mukherjee10, Pettarusp M Wadia11, Ravi Yadav12, Soaham Desai13, Niraj Kumar14, Deepika Joshi15, Sakthivel Murugan4, Atanu Biswas10 , Pramod K Pal12 , Merina Oliver4, Sandhya Nair4, Anbu Kayalvizhi4, Udita Mahadevia4, Susinder Sundaram4, Manjari Deshmukh4, Akshi Bassi4, Charugulla Sandeep4, Nitin Mandloi4, Uday Muthane16, Shymal K Das10, Andrew S Peterson4, Thomas Sandmann1, Ravi Gupta4, Vedam L Ramprasad4, Parkinson Research Alliance of India (PRAI)

1Denali Therapeutics, South San Francisco, CA, 2Parkinson’s Disease and Movement Disorders Clinic, Bangalore, India, 3Manipal Hosp., Bangalore, India, 4MedGenome Labs Pvt Ltd, Bangalore, India, 5All India Inst. of Med. Sci.

(AIIMS), New Delhi, India, 6Medanta Hosp., New Delhi, India, 7Medanta, The Medicity, Gurgaon, India, 8Nizams Inst. of Med. Sci. (NIMS), Hyderabad, India, 9Inst. of NeuroSci.s Kolkata, Kolkata, India, 10Bangur Inst. of NeuroSci.s and Inst. of Post Graduate Med. Ed. and Res. (IPGME&R), Kolkata, India, 11Jaslok Hosp. and Res. Ctr., Mumbai, India, 12Natl. Inst. of Mental Hlth.and NeuroSci.s (NIMHANS), Bangalore, India, 13Shree Krishna Hosp. and Pramukhaswami Med. Coll., Bhaikaka Univ., Karamsad, India, 14All India Inst. of Med. Sci., Rishikesh, India, 15Dept. of Neurology, Inst. of Med. Sci., Banaras Hindu Univ., Varanasi, India, 16Parkinson and Ageing Res. Fndn., Bangalore, India

Genetics of Young and early Onset Parkinson's disease from India

Genetics Of Parkinson’s in India – Young Onset Parkinson’s Disease (GOPI-YOPD) : Genetics of Juvenile, Young, and Early Onset Parkinson’s Disease

Prashanth LK, Vinay Goyal, Thenral S Geetha, Ramesh Menon, Rukmini Mridula Kandadai, Hrishikesh Kumar, Rupam Borgohain, Adreesh Mukherjee, Pettarusp M Wadia, Ravi Yadav, Soaham Desai, Niraj Kumar, Ravi Gupta, Sakthivel Murugan, Atanu Biswas, Pramod K Pal, Merina Oliver, Susinder Sundaram, Manjari Deshmukh, Akshi Bassi, Charugulla Sandeep, Nitin Mandloi, Uday Muthane,  Shymal K Das, Somasekar Seshagiri, Vedam L Ramprasad, – Parkinson Research Alliance of India (PRAI)

Presented as abstract at the International Parkinsons and Movement Disorders Society Conference held in September 2022 at Madrid, Spain.


To determine the genetic and demographic patterns of juvenile-onset (JOPD, <20 years), young-onset (YOPD, 20-40 years), and early onset (EOPD, 40-50 years) Parkinson’s disease (PD) in India.


GOPI-YOPD is a prospective multicenter, collaborative study to analyze clinical and genetic patterns of JOPD, YOPD, and EOPD1.  Genetic data of 662 samples ( Whole Genome Genotyping = 572, Whole Exome Sequencing =572; Whole Genome Sequencing=90) were analyzed. Rare and known pathogenic and risk SNVs/InDels and CNVs in primary PD genes (11), risk PD genes (12), and additional PD genes (40) were analyzed.


Clinical cohort: A total of 668 subjects (M:F 455:213) were recruited with a mean age at onset of 38.7 ± 8.1 years. The mean duration of symptoms at the time of study was 8 ± 6 years. Fifteen percent had a family history of PD and 13% had consanguinity. JOPD had the highest consanguinity rate (53%). YOPD and JOPD cases had a higher prevalence of consanguinity, dystonia, and gait and balance issues compared to those with EOPD. In relation to nonmotor symptoms, panic attacks and depression were more common in YOPD and sleep-related issues more common in EOPD subjects. Overall, dyskinesias were documented in 32.8%. YOPD subjects had a higher frequency of dyskinesia than EOPD subjects (39.9% vs. 25.5%), but they were first noted later in the disease course (5.7 vs. 4.4 years).

Genetic findings:  Among PD cases we prioritized 617 variants in 402 samples. Pathogenic and likely pathogenic variants were identified in 5.1% and 4.7% PD cases respectively. In a large number of PD cases (51%) variants of uncertain significance (VUS) were identified. Risk variants were identified in another 5.9% of the PD cases. The most frequent genes with pathogenic variants included PRKN (n=36, 5.4%), PLA2G6 (n=12, 1.8%), PINK1(n=8, 1.2%), CHCHD2 (n=4, 0.6%),VPS13C(n=4), PANK2 (n=3), SPG11 (n=3), SYNJ1 (n=3), ATP13A2 (n=2), FBX07 (n=1), MAPT (n=1), PRRT2 (n=1), WDR45 (n=1), GCH1 (n=1).  Many risk variants/VUS were identified in GBA (n= 59 / 8.9%) and LRRK2 (n=27 /4.1%). In several PD cases we found homozygous deletion in the PRKN gene (n=20 / 3%). Overall, the diagnostic yield is found to be high in JOPD (43.7%), followed by YOPD (10.9%) and EOPD (4%). We also generated PD polygenic risk scores (PRS) using SARGAM genotyping array data. PRS revealed that the PD cases with no prioritized pathogenic/likely pathogenic variants have significantly (p-value < 0.001) higher PD PRS as compared to control population and PD with prioritized pathogenic/likely pathogenic variants.


This large cohort shows differing genetic patterns in JOPD, YOPD, and EOPD cases. PRKN gene is the commonest pathogenetic variant and has large pathogenetic deletions. In addition to pathogenic mutations, a high percentage of VUS indicates untapped genetic understanding. The PRS carries diagnostic utility for possible regular use.


  1. Kukkle PL, Goyal V, Geetha TS, Mridula KR, Kumar H, Borgohain R, Mukherjee A, Wadia PM, Yadav R, Desai S, Kumar N, Gupta R, Biswas A, Pal PK, Muthane U, Das SK, Quinn N, Ramprasad VL; Parkinson Research Alliance of India (PRAI). Clinical Study of 668 Indian Subjects with Juvenile, Young, and Early Onset Parkinson’s Disease. Can J Neurol Sci. 2022 Jan;49(1):93-101. doi: 10.1017/cjn.2021.40.
Deep Brain Stimulation

Understanding the Process of Deep Brain Stimulation (DBS) Surgery

Pathyway for a Deep Brain Stimulation (DBS) Surgery

When we decide or think to undergo Deep Brain Stimulation (DBS) surgery for Parkinson’s disease, the most common thought comes is HOW IS THE SURGERY DONE?. There are various steps before the surgery and you would have gone through these process like Levodopa challenge, cogntive assessment, decision making ability, speaking to people who have underwent surgery. BUT, still the question of how the surgery is done remains an intriguing enigma. In this blog we go through the process of SURGICAL DAY EVENTS along with the video and images to give an insight to all the people to understand the same. A brief visual overview of the events can be found on youtube : (This video link is available for above 18+ years only due to the descriptive videos)

One Day Prior to DBS Surgery

Most of the people planned for Deep Brain Stimulation (DBS) surgery are admitted a day prior to the surgery. Usually this day Patient and family gets settled after hospital admission process are finished. No medication changes are done on that day (If any changes are usually done atleast a week before – either stopping or adding). Surgical site preparation instructions are given by the surgeon (like head shaving / Part preparation etc). You would have your usual meal and medications before going to sleep.

On the Day of DBS Surgery

Your day begins around 6 to 7am in the morning, when the treating nurse checks and provides instructions. You would not be given any Parkinson’s disease medications (unless specifically indicated by the doctor) or food (you will be fasting overnight till the surgery is finished). You can take your other medications like for blood pressure etc. These would have been instructed to you a day before itself by the treating team and the Neuroanesthetist. Once your pre-surgical instructions are carried out by the nursing team (like part preparation, supervising medications), you would be shifted for the Frame fixation. From this point onwards your surgical day starts. We will go through them as step by step below.

Step-1 : Frame Fixation

Frame fixation for Deep brain stimulation surgery.
DBS Frame being fixed by Dr. Kiran Khanapure and Dr. Harish PN

You would be taken for Frame fixation, where in a box type frame is fixed on your head with local anesthesia. This box will act like a landmarks for various brain structures. (In simple way it like graph computation using X, Y and Z co-ordinates to locate different brain structure)

Step – 2 : Imaging of the Brain with Frame

Imaging following frame fixations for Deep brain stimulation (DBS) surgery
DBS Patient undergoing CT Brain after Frame being fixed

Following the fixation of the frame, you will undergo imaging (Commonly CT Brain is done. MRI can also be done). This will help to get the images of brain with the frame, which will act as anchor points to locate different distances in the brain.

Step – 3 : Planning of the Surgical co-ordinates

Planning process on the Stealth station for Deep brain stimulation (DBS) surgery
DBS plan on a stealth station

Once the imaging is done, you are shifted to the operating theatre room. Here you would be set in a comfortable position (so that you can stay like that for next few hours). In the mean time, the treating team will merge your images on a specialized software. From this software, they will choose the brain target (in PD mostly it would be subthalamic nucleus. Some time GPI is considered) and would be able to get co-ordinates based upon there distances from the frame anchor points. This will act as X, Y, Z co-ordinates of a 3d graph to target the brain.

Step – 4 : Positioning, Burr hole

Dr. Kiran Khanapure and Dr. Harish PN in DBS surgical process
Dr. Kiran Khanapure and Dr. Harish PN in the surgical process

Once the planning and co-ordinates for the surgery are finalized. The surgical team will set up a frame at the operating table. With this frame, then can mark the distances the electrodes to travel to reach the intended location. You would be awake or mildly sedated during this whole process. Once the frame is fixed a small hole is done in the skull (a size of a 25 paisa coin) to target one side of the brain. Later similar process with another hole is done to target other brain site. Once this is done, the scene is set up for assessment and target finalization.

Step – 5 : Microeletrode Recording

Microelectrode recording of subthalamic nucleus during Deep brain stimulation (DBS) surgery
Microelectrode recordings (Source :

Once the burr hole is done a microdrive is fixed and fine recording electrodes are pushed in the planned trajectory. Each part of the brain has different electrical activity pattern and based upon which we can assume where the electrodes are going get placed. This is a method of re-affirmation of Imaging planning done previously and gives an confirmation of right position. Based upon these recordings the position of electorde is considered.

Step – 6 : Macro Stimulation and Clinical assessment

Clinical assessment during the DBS surgery
Clinical assessment. Source :

Once the microelectrode recordings are done, then the most important clinical assessment will start. In this step, small currents are given in the intended target region and clinical assessment for benefits would be done. This is point where patient has to be very alert and respond to various questions and tasks given by Dr. Prashanth LK. The benefits of stimulation and at voltages sides effects / excess effects are noted and recorded. This clinical assessment gives an final confirmation of the electrode placements.

Step – 7 : Electrode fixation

X-ray fluroscopy to look in the electrode positioning during fixation
X-Ray imaging during the process of electrode fixation

Following the electrode placement, it is fixed to the position and locked by a cap.

Step – 8 : Repeat procedure for the second site

After the electrode placement on one side, Step 4,5,6,7 are repeated on opposite side to fix the second electrode.

Step – 9 : Check Imaging

Check CT brain re-merged with the software to cross check the electrode trajectories
CT imaging showing Reconfirmation of trajectories after the electrodes are fixed

Once both the electrodes are fixed, a check imaging is done preferabbly and then these images are merged with the actual intended trajectories. The goal is to cross confirm the initial planned trajectories with the final fixed trajectories.

Step – 10 : Battery Placement

Image showing the location of battery placement in DBS patients
IPG (Battery) placement below the collar bone. Source :

Following the check imaging, now you would be planned for battery placement. This point onwards you would be in general anaesthesia and deep sleep. A small pocket is made in your chest, just below the collar bone. After this an tunnel is created from the battery area to the head (Near the burr holes) just beneath the skin and both the parts are connected by the wire. Once all the electrical systems are connected, they are checked for integrity of the circuit, before closing the surgical sites. With this the surgical process is finished.

Step – 11 : Immediate Post Surgical care

Once the surgical process is finished you are weaned from the anesthesia and then shifted to the ICU. You would be awake (probably exahusted /sleepy). No oral feeds are given for another few hours at the discretion of the anesthesia team. Following that your regular Parkinson’s disease and other medications are started. You would be in the Intensive care unit overnight. There would some pain at the surgical wound points, but usually less as you would be given pain killer.

Step – 12 : Point to Remember

Please remember, surgical process is to fix the DBS stimulation system in the brain. The system is not yet assessed and started. It would be done subsequently at a later date. The whole surgical process lasts for 8-10 hours. In some patients the process may be staggered on different days, based upon the comfort levels of the patient and the surgical teams. There would be some deviations based upon each case to case basis, which would be discussed with the patient and family before and during the procedure (if required)

Day After the DBS Surgery

The next day following the Deep Brain Stimulation (DBS) surgery, you would be assessed. Most of the people would be back to normal status, with possible some sense of improvements, due to microlesional benefits. If you are deemed fit, then you would shifted to the ward, where you would stay for next few days.

Your whole stay in the hospital will last between 5-7 days on average.

Post Discharge

Post discharge, you would be guided on dates for surgical suture removals and planning for DBS programming.

The whole write up can be viewed as short 3 minute video on Youtube


A Sneak Peak into Gastrointestinal (GUT) Conundrum of Parkinson Disease

The understanding of Parkinson’s disease has been dramatically changing over the years. The gastrointestinal symptoms of Parkinson disease are well recognized and keeps on adding up to the number of symptoms of Non Motor Symptoms (NMS). Even further the question of whether Parkinson’s disease arises from Gut perse has become a promienent question among the scientists across the world. The has given raise to concept of GUT-BRAIN axis and further postulation of Gut first and Brain first theories. In this blog, we are trying to highlight the awareness about various gastrointestinal symptoms noted in patient with Parkinson’s disease.

The Gastrointestinal symptoms in Parkinson disease is one of the common NMS in PD, even early in the disease course. Several factors such as loss of dopaminergic activity, presence of Lewy bodies, gut exposure to neurotoxins, gut dysbiosis, cytokine-induced toxicity, inflammation-derived oxidative damage and aging have been associated with the pathogenesis and progression of PD although robust evidence is lacking.

Gastrointestinal Symptoms of in Parkinson Disease

The symptoms of Gut in Parkinson’s disease can be noted all the way from the mouth and salivary glands. the following list helps to understand the possible symptoms which could be associated with Parkinson’s disease.

Salivary Glands symptoms

  • Reduced Saliva Production
  • Low swallowing frequency leading to drooling

Mouth related symptoms

  • Pooling of saliva and problems with movements needed to brush teeth can cause dental dysfunction
  • Jaw tremors related discomfort

Pharynx related symptoms

  • Oropharyngeal dysphagia increases risk of aspiration

Oesohagus related symptoms

  • Slow esophageal transit
  • Segmental esophageal spasm
  • Spontaneous contractions of proximal esophagus
  • Air trapping
  • Aperistalsis
  • Gastro-esophageal influx

Stomach symptoms

  • Impaired gastric emptying causes nausea
  • Bloating
  • Early satiety and weight loss

Small Intestine symptoms

  • Dilatation leading to bloating sensation

Colon symptoms

  • Colonic dysmotility
  • Constipation
  • Megacolon
  • Volvulus
  • Bowel perforation

Rectum symptoms

  • Anorectal dysfunction leads to difficulty with defecation

Management of Gastrointestinal symptoms in Parkinson disease

There are various symptomatic options for various GI related symptoms. The same has been highlighted in this article image.

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