Video

A Focus On Ability Film Festival Award

Many of you know my story but recently with some footage from my early years training and Jonathan Sayas made a video which brings a bit more of my recent exercise into the picture. It was a bit rushed so I didn’t expect too much but it was nice to get an award and I picked it up in early September at the NSW showing session out near Liverpool. It was sponcered by NOVA employment and I met Anne, Director of Nova Employment, Martin, CEO and Ryan who runs the competition. Here is a link if you want to watch it.

RAYO DE ESPERANZA ganó el concurso de vídeos elegidos por el público en el Congreso Mundial de Parkinson

THIS ARTICLE APPEAR IN ENGLISH BELOW:

El vídeo de Christine Jeyachandran “Ray of Hope” (“Rayo de esperanza”) ganó el concurso de vídeos elegidos por el público en el Congreso Mundial de Parkinson celebrado a principios de julio.

El vídeo fue presentado en la ceremonia de apertura del Congreso Mundial de Parkinson, ante miles de personas en Barcelona (España). El vídeo cuenta la historia de Ray y Ana María, una pareja Irlandesa-Peruana que vive en Perú y se enfrenta al diagnóstico de Parkinson y al estigma asociado a la enfermedad.

Christine, que padece Parkinson de aparición temprana desde los 37 años, dirigió y editó Ray of Hope. “Ray y Ana María encontraron mi vídeo Handstand for Parkinson’s, que fue finalista en el concurso de vídeos WPC en 2019, en Japón. Decidimos conocernos ya que ambos vivíamos en Perú y nos hicimos amigos.

Christine decidió hacer un documental para crear conciencia sobre el Parkinson y entrevistó a 5 personas incluyendo a Ray. No ha podido completar este proyecto, pero quedó impresionada por la elocuencia de Ray y decidió hacer “Ray of Hope” (Rayo de esperanza) como cortometraje para el concurso de vídeos del Congreso de 2023.

Ray y Ana María participan en un grupo de apoyo en Lima para personas afectadas por el Parkinson (pacientes y cuidadores). Muchos enfermos de Parkinson se enfrentan a problemas físicos, así también como la depresión y el aislamiento, que agravan su deterioro. Muchos carecen de acceso a información y recursos.

Christine quería que Ray y Ana María asistieran al Congreso para conseguir más recursos para ayudar a las personas con Parkinson de Perú. Puso el vídeo a nombre de Ray, para que si por casualidad ganaba, el premio ayudara a Ray a ir a la conferencia. Christine ya estaba inscrita para asistir y hablar, pero Ray recibió una beca de viaje y apoyo del WPC para ayudarles a llegar hasta allí. Están muy agradecidos.

El vídeo tiene visitas y votos de Perú, Australia, Irlanda, de América Latina y de todo el mundo. Christine y los protagonistas quieren dar las gracias a todos los que han votado y les han ayudado a ganar el premio del público.

Christine dice: “Ray estaba encantado con la victoria. Viajó a España para recibir el premio y su hermano vino desde Irlanda para verle allí”.

Aunque el video de Christine no ganó en 2019, se sintió tan inspirada por el Congreso que creó un grupo de apoyo en su comunidad del sur de Perú, donde vivía en ese momento, y cofundó la Alianza de habla hispana que abogan por una mejor atención e investigación, y fue elegida embajadora del WPC. Ella ve que el congreso ha entusiasmado a Ana María y a Ray.

Ray: ¡Conté mi historia porque quería liberarme! Me sentía oprimido por el Parkinson. Al abrirme al mundo y compartir mi historia creo que me ayudé a mí mismo y a otros a ver la esperanza más allá de la enfermedad.

Christine: “Los comentarios y las reacciones han sido alentadores y esperamos que Ray of Hope desafíe el estigma asociado al Parkinson. Algunos dicen que en el Oeste no existe el estigma, pero ¿por qué tanta gente oculta su diagnóstico?

Por favor, comparta este vídeo para ayudar a la gente a entender el Parkinson, pero también tenga en cuenta que cada persona experimenta el Parkinson de manera diferente.

https://youtu.be/moq1JRD4qPs

Popular Choice Award at WPC 2023 goes to Ray of Hope

‘Ray of Hope’ wins the Popular Choice Award at the World Parkinson’s Congress 2023

19th July 2023

Christine Jeyachandran’s video ‘Ray of Hope’ won the people’s choice video competition at the World Parkinson’s Congress in early July.

The video was featured in the World Parkinson’s Congress opening ceremony in front of thousands people at the in Barcelona, Spain. The video tells the story of Ray and Ana Maria, an Irish Peruvian couple living in Peru who are dealing with a Parkinson’s diagnosis, the stigma associated with the disease.

Christine, who has had Young Onset Parkinson’s from the age of 37, directed and edited Ray of Hope. “Ray and Ana Maria found my video Handstand for Parkinson’s which was a finalist in the WPC video competition in 2019, in Japan. We decided to meet as we both were living in Peru and became friends.

Christine decided to make a documentary to raise awareness about Parkinson and interviews 5 people including Ray. She has been unable to complete this project but was struck by Ray’s eloquence and decided to make ‘Ray of Hope’ as a short film for the Congress video competition for 2023.

Ray and Ana Maria are involved in a support group in Lima for people affected by Parkinson’s (patients and carers). Many with Parkinson’s face physical challenges as well as depression and isolation which compounds their decline. Many lack access to information and resources.

Christine wanted to get Ray and Ana María to attend the Congress to get further resourced to help the people in Peru with Parkinson. She put the video in the name of Ray, that if by chance it won, the prize would help Ray get to the conference. Christine was already booked in to attend and speak, but Ray received a travel grant and support from the WPC to help them get there. They are so grateful.

The video has views and votes from Peru, Australia, Ireland, from Latin America and throughout the world. Christine and the protagonists want to thank everyone who voted and helped them win the people’s choice award.

Christine says “Ray was overjoyed with the win. He travelled to Spain to receive the award and his sibling came from Ireland to see him there”.

Although Christine video didn’t win in 2019, she was so inspired by the Congress she started a support group on her community in the south of Peru, where she was living at the time and cofounded Spanish-speaking Alliance of stakeholders advocating for better care and research was chosen as an ambassador for the WPC. She sees that the congress has enthused Ana Maria and Ray.

Ray: I told my story because I wanted to break free! I felt oppressed by Parkinson’s. By opening up to the world and sharing my story I believe I helped myself and others see the hope beyond the disease.

Christine: “The comments and feedback has been encouraging and it is our hope Ray of Hope will challenge the stigma associated with Parkinson’s. Some say in the west but if there is no stigma, then why do so many people hide their diagnosis”.

Please share this video to help people understand Parkinson’s but also note that everyone experiences Parkinson’s differently,

https://youtu.be/moq1JRD4qPs

Handstand for Parkinson’s: https://youtu.be/h1B6kUgN6WQ

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

I have a dream ….for Club Dopamine!

A research survey found a significant number of Latin American (Llibre Guerra et al; 2022) people had Parkinson’s Disease symptoms but had NEVER been diagnosed and not had medical or neurological attention.

The study didn’t ask why but we can imagine some don’t know what Parkinson’s is and others or those same people hide because of stigma and discrimination. They become isolated which worsens their disability and increases immobility.

Parkinson’s disease has no CURE.

Raising awareness about Parkinson’s is crucial to prevent late diagnosis and start early physiotherapy/exercise.

We must explain that PD is not a curse, your fault or something to be ashamed of.

We are taking action to prevent discrimination and isolation and encourage holistic treatment including exercise which can help symptoms considerably.

We need help!

I have a small project I’d like to find funding for that aims to empower people with Parkinson’s (PWP) to thrive:

– to be understood,

– to stop isolation,

– and to get treatment!

Over the last few years advocates have emerged who are willing to share their stories about living with Parkinson’s in Peru. The daily struggles, the small triumphs and the ongoing battle inspire us to continue. My story has inspired people to exercise to improve their Parkinson’s symptoms and Dorys’ story about the family’s sacrifice has had immense international feedback.

I just published Ray’s story , and it is turning heads and breaking stigma. In 3 weeks it has had 1000 views and lovely comments. All this without marketing, imagine what we could do if we had a marketing budget.

Stories connect us. Stories about family. The love seeps into our hearts: strained voices, biting of lips, and love in a look. We have these treasures(interviews) in our hands as I filmed them with a professional in 2021 but they need to be edited and marketed for maximum exposure.

I can’t take this on. I’d like to see it created into a documentary for a film festival. It will give an editor a wonderful creative opportunity. They’re in Spanish but modern technology means this isn’t a barrier. I don’t know how it is going to get made but I have faith it will be made and will be a powerful approach to breaking down stigma but not in an educational boring way…

Watch the first story which happens to be in English and catch a bit of the essence of this project.

I have a dream….but I have had many dreams and I know I often get above and beyond what I expect. It is happening in my life right now …but that’s another story.

I dream not for myself but for those who message me in pain in the middle of the night, Sara has no neurologist, no exercise coach, she can’t sleep because of the pain.

For Sara and many more… For Club Dopamine! May this project get the funding or passionate philanthropist it needs.

Llibre-Guerra JJ, Prina M, Sosa AL, Acosta D, Jimenez-Velazquez IZ, Guerra M, et al. Prevalence of parkinsonism and Parkinson disease in urban and rural populations from Latin America: A community based study. The Lancet Regional Health – Americas. 2022 Mar;7:100136.

Ray’s story:

Opportunities and Biostatistics

In June I entered a program called New Wave at the University of New South Wales focused on entrepreneurship (for graduates and students). I learnt much and also had the opportunity to pitch the Alianza for funding. It was great opportunity to practice public speaking and although the video has not been made public, is the link, exclusively for my blog followers. I’d like to do a TED talk one day so I still have much to learn but practice is crucial step towards improvement.

4+ minute speech plus question time – (it goes on to other speeches)

I’m getting more opportunities to speak at different events and have 6 workshops/small talks booked over the next 3 months. I have been invited to give a workshop in the PDM Alliance conference in October in DC (USA) and I will also make a quick trip to Peru at the same time.

But for now I have about 3 weeks left in biostatistics and a big assignment to conquer before I can say I finished my masters subjects and can focus on my research and preparing for my talks and trip.

Your film has 44 wonderful comments

My Film” Would you sell your house to save your mother” was recently in a video competition called “focus on ability”. Unfortunately the website could only hold 10 comments at a time so I couldn’t see all the comments and I asked Ryan from Focus on Ability if there was a way I could see them all. He wrote “Your film has 44 wonderful comments”. I was shocked, that it had so many and most were from people I didn’t even know.

Thank-you everyone for voting and for sharing and for the amazing comments on the video. I do not believe it won the popular vote but you never know and on the 27th October about 7pm Australian time it will be announced in a ceremony on facebook of “Focus on Ability”. It is up for a judges award as an International Documentary.

Win or loose it has been a valuable experience for me in editing the video and managing the whole process of the competition. The video has been seen by over a 1000 people more than saw it previously and many have been challenged, realised how blessed they are and learnt something about Parkinson’s they didn’t know. I have also connected with many people who helped me share it yet again.

It also encouraged me to start another video project but this time with a young professional. I don’t want to give too much away but I think it is going to to be a powerful short documentary and our aim is to get it into a mainstream film festival.

Of course I’m now learning you need funding to promote your film and bring it to the attention of the public but since we’ve stepped out in faith and filmed the project we’re going to keep going and have faith that the funding to promote it will come in once we have the final product, it should sell itself.

I don’t want to give too much away just yet but watch this space.

Thanks again for your support and interest.

Christine J.

44 Comments from around the World

Beautiful and heart touching video. Creates a lot of awareness on the disease.. God bless the family.	Marsden Park Australia
What an inspiring and educational short film Congratulations	Santa Monica United States
Very touching	Sutherland Australia
super video	wesley hills United States
Amor sensibilidad empatia y compromiso necesarios para afrontar esta condicion y hacer de esta vida un mejor mundo	Pereira Colombia
Tried to write something but have no words to describe mother .	Liverpool Australia
This portrays humanity and love that is genuine.	Bamenda Cameroon
Excellent work by Christine in raising awareness about this disease and the challenges the patient and their families face.	Westleigh Australia
Christina honoured her mother by following and keeping one of the ten commandments.	Kolkata India
Inspiring and Impactful Love is a verb.	Sydney Australia
Well done Christine	Caterham United Kingdom
Excellent work of her daughter. She shows compassion and love for her mother. Credit goes to the mother herself while rearing her. She has learnt from her mother herself. It's a rare example	Delhi India
Es una gran realidad no hay cura para el Parkinson yo tambin lo sufro pero el amor todo lo puede est gran familia merece ganar con ste vdeo.Voten e inviten a ms personas que lo vean y voten por el. El parkinson no nos definesin embargo es una enfermedad muy difcil de sobrellevar tanto el paciente como la familia se van consumiendo con la enfermedad.	Escobedo Mexico
Excellent story and awareness of this decease. Amazing family and the way they took care of their mother	Berwick Australia
Juampy	Juampys
Christina did a wonderful thing I wish she become a roll model for many. Many do not care for their aged parents even though they have plenty of wealth. May the Lord bless Christina	Pathanamthitta Kerala India
Very touching. Indeed true love can do anything.	Thane-Mumbai India
Muy conmovedora historia y lo ms importante lucharon por su madre la f mueve montaas un ejemplo a seguir bendiciones	TALARA Peru
Excellent very touching	Chennai India
Truth well told…	Bengaluru India
Thank you for helping raise awareness for this unrelenting disease. We all need to speak up to raise awareness so we can end PD now	California United States
PIURA	Piura Peru
A heartwarming story will told. May the angels of God protect us all from evil.	Oatley Australia
Inspirational story about a family willing to sacrifice their home to help their mother with Parkinson's.	Penshurst Australia
Piura	Piura
An extremely moving film. What a wonderful sacrifice this family has made for their mother.	Caterham United Kingdom
It is an amazing story well done	Carlingford Australia
Amazing story Thank you for sharing and creating the video to raise awareness on debilitating Parkinsons disease and its impact on function family and finance. Thank you Pray that there will be a breakthrough in finding cure for this disease.	Homebush Australia
Very natural without exaggeration down to earth informative film	Bangalore KarnatakaIndia Australia
Very moving Hope we find a cure for Parkinson soon. Instead of spending trillions of dollars on war machinery we should work on finding cure for Parkinson AIDS Cancer etc.	Warminster United States
Rosita is not like many people of this world but allowing God to change the way she thinks. She knows how to do everything that is good and pleasing to God.Romans 122 CEV. In serving her mother's needs she realizes the value of mothers. Parkinson's is debilitating and without medical intervention life is severely restricted and causes an intense emotional with a mental impact that isolates the person. Thanks for highlighting the need in some little published countries.	Cromer Australia
A true story of love compassion and sacrifice an example to emulate of Honouring your father and mother a story that will inspire many to pray for and support those suffering from Parkinsons disease.	Caterham United Kingdom
Very enlightening thank you.	2207 Australia
Well done a brave step to save the mother and I support this because as scriptures says nothing is greater then LOVE… It is God's love that saved us from the bondage of sins and saitan…All Praise and Glory to God for giving some comfort for this sister…	Little Andaman India
The world needs to see this powerful story. Wish this film will get recognized and that many more will benefit from this very open and honest effort.	Bangalore India
A close knit family's to put the Mother above all their personal need which is selling their prized possession 'The House' is very touching and moving. Very appealing film.	Bangalore India
Truly touched.	Sydney Australia
Thankyou everyone for your votes. I know I have to a wonderful community supporting me. My friends like Ana Mara Sabela Lizzie Esme Larry. David and my kids too have put in hours of help checking and rechecking. It takes a community to make a documentary. And thanks to the family for inspiring so many. I have a longer version of their story at Christine Jeya on YouTube. We hope this video shows the need for a cure and better treatment for all.	Arequipa Peru
Inspirational.	Concord Australia
Wonderful Christine So good	Caterham United Kingdom
A video which depicts reality of life.It was a very moving video about the effect of the disease. More so about the sacrifice of the family to give the life back to the mother who gave them life in the first place and made so many sacrifices to bring them up.The video is about celebration of life rather than gloomy helpless one It is about victory over one of the most debilitating diseases in life.	Penshurst Australia
Well done. If the problem can be solved by money its not a problem its the costs. – Jewish proverb. I would do the same.	Old lyme United States
Ta Doris t vas a ganar	Piura Peru
Muy lindo y espero que esto llegue a muchas personas para que sepan su historia	Piura Peru

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.

Rise21 Finalist – Alianza Iberoamericana de Parkinson

Alianza Iberoamericana de Parkinson is an exciting initiative that needs support! I’m looking to generate revenue to get this life-impacting initiative off the ground. My project has been short-listed in RISE21 a competition for social enterprises that help reach the UN development goals.

Without timely treatment, Parkinson’s Disease disables many. The Alliance of Parkinson’s aims to increase the quantity, quality and accessibility of resources and training available to health professionals and patients and their families, to improve services and the quality of lives of people with Parkinson’s throughout the Spanish speaking world.
See this video for more information. Please contact me by comments if you’d like to know more or can help fund or find funding for this Project:

Please watch the video at this LINK: https://lnkd.in/dMt3Jds

Special thanks to Ludovic Kohn for the drone footage – check out his channel here for other amazing footage. Amazing! More of his videos on his youtube channel:

https://www.youtube.com/channel/UCbCDhE-V0Id4d9YlIiiEQrg

#health #parkinson #rise21 Ignacio Mata

Would you sell your house to save you mother?

https://youtu.be/5vAlkXmsSSk

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.

https://youtu.be/jAJjRFxLioI