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The World Parkinson’s Congress is almost here

It has been 3.5 years in the making. I became an Ambassador in February 2020 and we’ve met bi – monthly with the ambassadors ever since.  So it’s surreal that the congress is finally a reality. So much work has gone into it and there are over 3000 people registered. There is still time to register and or sponsor the event so never fear.

The 6th World Parkinson Congress (WPC 2023) will be held in Barcelona, Spain from July 4 – 7, 2023. Everyone in the community who is touched by Parkinson’s, whether a researcher, physician, family member, clinician, nurse, or rehab specialist is welcome to attend the WPC 2023. World Parkinson Congresses are 100% inclusive scientific events.

WPC 2023 will be taking place at the International Barcelona Convention Center at Plaça de Willy Brandt, 11-14, Barcelona, Spain 08019. This location is convenient to the subway system and hotels that will have rooms for delegates.

Where to find me at the congress including 3 speaking opportunities:

  1. Tuesday 5th July – In Foundations workshop –  By booking only 
  2. I’m on the WPC Booth, Banquet Room on Wednesday 11:15- 1:30 
  3. Thursday 6th July 12:30 pm

Workshop: Reaching Underserved Communities in Latin America 

Host: Christine Jeya (Australia)

Where: Support Group Leaders room is # 312. Hosted by the PMD Alliance

What: Interactive learnings about needs, challenges and strengths in Latin America. I am so excited about this session as I am making it super interactive so you can understand the needs and frustrations of living with PD in South America and also the opportunities and joys.

       4. Friday 7th July 3pm UNANNOUNCED SESSION and location – I will update the details here.

       5. Also my video RAY of HOPE will be shown at the beginning of a session but I don’t know when it will be.  Last time the session at              9am  started with the same short listed video so if you are in attendance you shouldn’t miss my video.

 

There is much more going on and I look forward to meeting folk in person and hope I remember names and faces. My husband David is a volunteer too and is signing up for extra volunteer sessions, bless his soul. He said they need more help!

David and I will have a few weeks holiday with family and friends in the lead up to the congress but I still have a little preparation on the side. 

If you haven’t signed up for the congress it is not too late. 

https://wpc2023.org/

Thanks for all your support 

Christine Jeyachandran 

 

 

 

 

 

 

 

 

 

VOTE FOR RAY OF HOPE

My video RAY OF HOPE has been short-listed to the World Parkinson Congress VIDEO competition 2023,  so I need 4 minutes of your time. I entered the video under the name of the protagonist. RAY FEENEY, not Christine Jeyachandran.

To win the popular vote, Ray and I need your vote. 

You can only vote once and for this reason they take your name and email but they don’t put you on a mailing list. It is to discourage dishonesty. Please vote only once and kindly recruit your family and friends to vote too.

Step 1.  Go to this page to watch the top 12, or Just Ray of Hope https://wpc2023.org/page/Top12-WPC2023

Step 2. You can skip the videos and just vote

https://web.cvent.com/survey/c8190b9c-c629-439a-afff-e516c2ba3cab/welcome

The button START appears – Press it then vote for RAY OF HOPE – RAY FEENEY

(As per the images)

 

Thank-you for your vote and support. You can also note my other video got an honorary mention. It is called: INVIGORATE

 

 

Put it out there!

 

A few years back I wrote a post about TED talks but I shy-ed away from saying that one day I’d like to do one. So now I am saying it out loud. You won’t get get there without support from my community. I have just been nominated (online) by someone who heard my new wave talk. I know it will take time, more nominations and I need a lot more training to prepare.

The first step…well forget that – an important step is practicing and with 8 talks/ workshops, from July to November this year, I am certainly getting onto that. I’d reading another insightful book on Public speaking but I am now looking for RECOMMNEDATIONS FOR A SCHOLARHIP recommendations to do a course.

COULD YOU?

Anyone willing and able to recommend me for a TED talk and or a public speaking training scholarship feel free to write a letter and send it to me or do it on LinkedIn through recommendations. You might like to explain ‘Why would Christine’s STORY be a great TED /TEDx talk and the impact it could have or has had already. TED is about presenting Ideas worth sharing – and the story would be one CORE element of the talk. The ‘idea worth sharing’ is in development but happy to chat one on one with you about that.

It can be short.

My motivation is to create awareness about young onset Parkinson’s and especially the benefits of exercise. Thank-you in advance.

FROM TEDx Website Sydney

Michael J Fox Research Project

This is a project announcement close to my own heart. See the link below.

Yes that is right it is about Parkinson’s Disease in South America, and specifically the Alianza Iberoamericana which I co-founded will be organising a stakeholder engagement. I will be a researcher on this project, which is is just in the planning staged right now. It is a huge undertaking and I am getting guidance from the proposal team and my university in Australia.

It has been a big team of people who put the application together and a big team of people who worked to get the Alianza Iberoamericana de Parkinson’s started.

I would love to take it further and have greater opportunities to help the Parkinson’s Community. Pray for a clear path. trustworthy partners and the right opportunities.

https://www.michaeljfox.org/grant/studying-epidemiology-parkinsons-disease-latin-america-learning-underrepresented-populations

Documentary

How do you get people’s attention and keep it?

I’m working on a documentary about Parkinson’s Disease with a professional filmmaker. Right now I am working on the opening script… a daunting task as it has to capture people’s attention and draw them in.

I need a script writer really, someone with an independent eye as I am too involved in the film to have perspective on it. I look forward to sharing with your the video next year and I am looking for marketing support as well to get it into the public spotlight and hopefully get some mainstream media attention when it is ready to release.

I have been extremally busy over the last 3 months and have not had time to post much but we all have these times in life and I look forward to returning to writing soon but need a few more months to get settled and catch up on a few projects, plus work and family responsibilities.

Thanks-you for reading my blog.

Enjoying God’s painting of the sky

Vote for my video as Popular Winner

Please vote for my international video in Focus on Ability Film Festival. For viewing and voting is on

https://www.focusonability.com.au/FOA/films/2297.html

UNTIL: August 16 midnight Sydney, Australia time (10am Tuesday 16th AUGUST New York Time)

Find my name: Christine Jeyachandran and Video – Would you sell your house to save your mother?

Under your film will be a vote now button. Click on the button and enter their details.

All votes must be verified to count. That means everyone who votes will be sent an email with a verification link, they then simply verify via that link. This means people cannot cheat and put in fake email addresses. We also have a manual verification system, so if your voters aren’t receiving the verification email don’t stress (spam folders etc) their vote will still count, we can identify the real email addresses. To incentivise voting, we are giving away $50iTunes vouchers to random voters.

Vote and ask others to vote too for the video.

Many years the difference between winning and 2nd has been under 5 votes so every vote certainly counts.

People can only vote once.

ESPANOL:

Por favor, vote por mi vídeo internacional en el Festival de Cine Focus on Ability. Se podrá ver y votar a través de www.focusonability.com.au

Cuando Abre: el martes a las 10 de la mañana, hora de Sydney, Australia (7pm el lunes 9 Agosto en ahora Peru)

Teminara: 16 de agosto a medianoche, hora de Sydney, Australia (9am, martes 16 Agosto en Peru).

Muchos años la diferencia entre el ganador y el segundo lugar ha sido de menos de 5 votos, así que cada voto ciertamente cuenta.

Sólo se puede votar una vez. Creo todo sera en Ingles por eso vez mi nombre y video – el video es en espanol con subtitulos en Ingles.

Busca mi nombre: Christine Jeyachandran y “Would you sell your house to save your mother”

Debajo de su película habrá un botón para votar ahora.

Haga clic en el botón e introduzca sus datos. Todos los votos deben ser verificados para que cuenten. Eso significa que todos los que voten recibirán un correo electrónico con un enlace de verificación, y entonces sólo tendrán que verificarlo a través de ese enlace. Esto significa que la gente no puede hacer trampas y poner direcciones de correo electrónico falsas. También tenemos un sistema de verificación manual, así que si tus votantes no reciben el correo electrónico de verificación no te preocupes (carpetas de spam, etc.) su voto seguirá contando, podemos identificar las direcciones de correo electrónico reales. Para incentivar el voto, regalamos vales de 50 dólares de iTunes a votantes aleatorios.

Vota y haz que todos tus conocidos voten por el vídeo.

Would you sell your house to save you mother?

3 April 2021: This family decided to sell the house they live in, to operate on their mother. What would cause a family to take such a drastic measure? Parkinson’s Disease! After 10 years of Parkinson’s Disease Dorys could not control her body. She trembled violently. Without graphic footage this story brings the reality and ugliness of Parkinson’s Disease and its effect on one family. It is an amazing story of suffering, sacrifice and love. 

The month of April is Parkinson’s disease awareness month. Parkinson’s Disease is a chronic progressive neurodegenerative movement disorder and is one of the Neurological disorders which are the leading causes of disability globally (GBD Parkinson’s Collaborators 2016), Parkinson’s disease, discovered more than 200 years ago, is the fastest growing neurological disease in the world. There is still no cure. We urgently need a cure for this disease and better treatment for people like Dorys. 

This story aims to demonstrate the reality of the disease for people who live in lower and middle income countries and the west too in some cases. The story is from Peru and is made by Christine Jeyachandran, amatuer youtuber.  Christine, an Australian, was diagnosed with young onset Parkinson’s disease diagnosis at the age of 37 and lives in Peru. The deficit of services for Peruvians breaks her heart.  She writes “Well, within minutes I was blown away by the family’s story. Despite not having my camera with me, I returned early from the beach to film the full story”

Christine started an association to help educate her community about Parkinson’s disease but she has contact with people all around Peru with the disease.

Please don’t let Dorys story be invisible. Her life and the life of her family matter and we need to let others know just how this. We need to END PARKINSON’S! 

Christine Jeyachandran – Parkinson’s World Congress Ambassador 2022 & Founder of Activate Liga Contra el Parkinson (Peru)

Please use these hashtags on social media:

#SellHouseSaveMother, #ParkinsonsDisease, #ParkinsonPeru, #NoMoreSuffering

The video is also available on youtube fully in Spanish.  

Alliance of Parkinson’s for Spanish speakers

Parkinson’s Disease is severely disabling in parts of the Spanish speaking world because of late diagnosis and poor treatment. Parkinson’s robs one ability to walk, talk, eat and smile. Some of this suffering is preventable.

Parkinson’s Disease is a growing pandemic with 7-10 million worldwide and it’s prevalence has doubled in the last 25 years and will double again in the next  20 years if we don’t find a fight for change. 2%  of people over 60 years of age but in Australia 20% of those diagnosed are under 50. Statistics don’t exist in many Spanish speaking countries. The whole family is affected economically and emotionally.  

In the west treatment exists. Parkinson’s disease can still be disabling and painful but in Spanish speaking countries treatment can be substantially lower (each country varies). I’m a founder of an iniative called Alianza IberoAmerican de Parkinson. This initiative is needed because:

  • Patient’s lack self management and lifestyle and trustworthy disease education would help address – false information (cure scams), social stigmas, dangers of isolation and inactivity and depression that lead to rapid disease advancement.
  • Many countries don’t have exercise and multidisciplinary programs that help prevent progression and advocacy and awareness raising is needed for this
  • and more health professionals need training in Parkinson’s disease. 

The Idea

The idea is to provide accessibility to Parkinson’s resources to patients, families, health professionals and associations. In turn we can unite for training opportunities across Iberoamerica (The Americas and other Spanish speaking locations). This will strengthen capacities to prevent disease progression, raise consciousness and educate professionals better in Parkinsons in Spanish and ultimately create advocacy for health service improvement including exercise and other key multidisciplinary programs. 

Such an alliance of support has never been done in Spanish. Everyone has been working in silos often reinventing the wheel. With COVID forcing leaders like cofounder Sonia Elizabeth and I  online as we cannot hold in-person meetings. The demographic is older and  some have struggle to adapt to zoom meetings but our community leaders, health professionals and associations are now online, zooming and doing webinars and we realised that we are closer than we thought and can work together.  

Our approach is unique as we’re not rushing to create new resources, we’re bringing together what already exists with the help of the World Parkinson’s Congress, who is collating resources in English. Our work will be to have such a directory in Spanish. International health associations exist for professionals but patient friendly resources will be prioritised. 

The Project has grabbed the attention of the target population in the Parkinson’s community. Three big associations are eager for us to share their Spanish resources. Over 10 countries are represented so far including associations, advocates and professionals. We surveyed their thoughts concerning the needs of their group and their commitment to help and resources they have. This has determined our aims. 

We are doing education webinars in partnership with others and next is with the Mohammad Ali Parkinson’s Foundation and the Federacion Espanola of Parkinson. The comments we are receiving show the difference we’re making in our target population and the ageement they have to see this succeed.

The potential

 “Scaling up means expanding, adapting and sustaining successful policies, programs, and projects in different places over time to reach a greater number of people”(Hartmann and Linn, 2008). This exactly the aim of this initiative – Our goal  is to increase the quantity, quality and accessibility  of resources available concerning Parkinson’s disease in Spanish to improve the quality of lives of people with Parkinsons throughout the Spanish speaking community.

Our strategies for Scaling Social impact include expanding our network of affiliated organisations connected by the shared goals and activities to disseminate a directory of resources, promote courses for professionals, and raise awareness together (online, printable, videos and webinars),

Our business plan focuses on these aims and encourages advocacy for better services and policies concerning Parkinson’s treatment. Ultimately we’d like to evaluate lessons learnt in policy and service initiatives and advocacy to create  context specific reviews that could guide further efforts. 

Future investment would help:

Currently we have no funding for awareness campaigns, paid staff or a web platform. We have volunteers and willpower. Future investment could create a technological platform, help cover costs of awareness raising and ultimately we’d like to provide leadership training across our partners organisation to build up effective and discerning leaders who can disseminate resources and lead awareness raising campaigns in a latino context. 

So what next… let us know if you can help.

Video Competition Votes Needed

PLEASE VOTE for my VIDEO:
https://sway.office.com/dn1Pp6ap2ir0Hz3E?ref=Facebook

Just a quick note to request you vote for my video in a little university video I’m studying public Health at Uni of NSW and answered in one minute: “What does the Decolonisation of Global Health mean to you?”

It is actually quite a complicated theme. The other videos are great – very academic. Mine is different and narrowly focused about #Parkinsons. I just answered in from a Parkinson’s in Peru perspective. I know the other answers were more complete but with 60 seconds I just had to keep it simple.

My aim is to bring more awareness about Parkinson’s disease Peru and find funding for a small project.

So here is the link – please vote and hopefully if it wins – we get more media, opporunties for this great need. Let’s get the word out there about Parkinson’s Disease.

Cheers Christine

PLEASE VOTE for my VIDEO. People’s Choice Competition. Voting will close at Midnight AEDT on 29th November 2020.

PLEASE VOTE for my VIDEO:
https://sway.office.com/dn1Pp6ap2ir0Hz3E?ref=Facebook