Intractable

📢 Exciting news giving hope to thousands! 🌟

We wanted to share with you a groundbreaking development in the field of epilepsy treatment. A courageous young boy named Oran Knowlson has become the first patient in the world to trial a revolutionary device implanted in his skull to control seizures. 🧠⚡️

This neurostimulator, which delivers electrical signals deep into Oran's brain, has already shown incredible results. It has successfully reduced his daytime seizures by an astounding 80%! 😮

Oran's mother, Justine, spoke to the BBC and shared the positive impact this device has had on her son's life. Not only has it significantly decreased his seizures, but it has also brought about a much better quality of life for Oran. 🌈

This groundbreaking surgery took place at Great Ormond Street Hospital in London as part of the CADET project. Oran, who is now 13 years old, underwent the procedure when he was 12. He has been bravely battling Lennox-Gastaut syndrome, a particularly treatment-resistant form of epilepsy since the age of three. His daily life has been plagued by numerous seizures, ranging from two dozen to hundreds. 😔

Before the surgery, Justine shared how epilepsy had taken over Oran's childhood, robbing him of precious moments. She described the various types of seizures he experienced, including falling to the ground, violent shaking, and loss of consciousness. At times, he even stopped breathing and required emergency medication to resuscitate him. 😢

However, with the introduction of this innovative neurostimulator, Oran's life has taken a positive turn. Despite also living with autism and ADHD, his epilepsy has been the most significant challenge he has faced. Justine expressed how her once bright three-year-old rapidly deteriorated after the onset of seizures, losing many skills along the way. 😔

Oran's participation in the CADET project, a collaboration between Great Ormond Street Hospital, University College London, King's College Hospital, and the University of Oxford, is paving the way for future advancements in epilepsy treatment. The Picostim neurotransmitter, developed by UK company Amber Therapeutics, is at the forefront of this groundbreaking endeavor. 🇬🇧💡

We are incredibly inspired by Oran's bravery and the dedication of the medical professionals involved in this pioneering work. Together, we can continue to raise awareness and support for epilepsy research, ensuring a brighter future for individuals like Oran. Let's celebrate this incredible milestone and the hope it brings to countless lives! 🎉💜

World first epilepsy device fitted in UK boy's skull Oran, who is 13, was sometimes having hundreds of seizures a day due to his severe epilepsy.

A heat wave is expected across parts of the UK next week. Staying cool is very important, especially if your seizures are triggered by heat.

Here are a few ways that may help you stay cool in the heat, and enjoy the sun whilst you still can:

- Try to avoid going out in the sun at midday when it is hottest. If possible, limit outdoor activities to early morning or early evening when temperatures are likely to be cooler.

- Make sure you keep well hydrated. Your brain is 78 per cent water so its performance will quickly be affected by lack of water. Keep a supply of water with you wherever you go.

- Where possible, stay cool in an air-conditioned room or use a fan to keep air circulating.

- Closing curtains and blinds can help to keep a room cool. Keep windows and curtains open early in the morning when the air is cooler. But as the temperature rises, shut doors and windows and close curtains so that the hot air does not heat the air indoors.

- Wear cool, light-coloured clothing that won’t absorb the heat.

- Listen to your own body. If you are feeling weak, dizzy or over-heated, take a break and find somewhere shady to relax. Tell a friend or family member how you are feeling.

- Keep your epilepsy medication in a cool place, out of direct sun and make sure you take as prescribed.

- Cooling off in the pool is always refreshing but remember to follow all the usual precautions – don’t swim alone; swim with a friend or family member; tell the lifeguard you have epilepsy; don’t swim in open water where there is no lifeguard; even a paddling pool can pose a danger if you have epilepsy – always cool off with a friend, never alone.

Read the rest of our article here: https://bit.ly/3VxrNcR

Rare Genetic Syndrome in Children Study

Thank you to Man v Fat Preston FC for raising money and awareness for Intractable Epilepsy charity.

The club is helping organise and run the Northern Tournament Finals being held at Afc Darwen on Sunday June 9th

With 2 games back to back

Europa League Final featuring Norton Sports and MVF Bolton

Champions League Final featuring MVF West Brom v MVF Warrington

We are also thrilled to be supporting the Intractable Epilepsy Charity on the day

Free entry to the day and hot and cold refreshments available as well as the bar !!

Please come along and support these geeat clubs

📢 Attention everyone! 📢

Are you passionate about supporting individuals with intractable epilepsy? Here's your chance to make a difference! 🙌

We urge you to send the Intractable Epilepsy Charity's pledge request to your local candidates running in the upcoming U.K. general election. By doing so, you can help raise awareness about this important cause and ensure that it receives the attention it deserves. 💜

Together, let's make a strong impact on the lives of those affected by intractable epilepsy. Spread the word and let your voice be heard! 🗣

Pledge Your Support Today | Intractable Epilepsy Pledge Your Support Todayhttps://static.wixstatic.com/media/a3e381_ea35d8bc30ac4914853ecb8c45dbb9d1%7Emv2.png https://www.intractable.org.uk/pledge-your-support-today Intractable Epilepsy

IQVIA would like to interview people with epilepsy who have a VNS device fitted. They would like to hear about your experiences of healthcare, how your epilepsy affects you, and what you think about using VNS.

The interviews will take place over the phone, and there will be a £100 payment for taking part. They would offer an additional £40 if you are also able to provide written evidence of your epilepsy diagnosis (such as a clinic letter or a screenshot of a patient portal which shows that you have epilepsy).

If you would like to take part, please email [email protected] and title your email “Epilepsy Action: VNS interviews”.

"Game-changing" new laser beam therapy, using technology developed at Epilepsy Society's Chalfont Centre, will help to reduce seizures in some patients with epilepsy.

Laser Interstital Thermal Therapy (LITT) targets the part of the brain causing seizures without the need for invasive surgery. The NHS will roll out this laser beam therapy from next month and it will be offered to around 50 patients a year with drug-resistant epilepsy in London and Liverpool.

Professor Ley Sander, our Director of Medical Services, said: “This non-invasive form of neurosurgery could be groundbreaking for some people with brain lesions whose seizures do not respond to conventional treatment options, including more invasive epilepsy surgery. “It will make surgery safer and faster and dramatically cut the recovery period for individuals. We are particularly proud that the sophisticated navigation system which guides this pioneering surgery was developed at the Epilepsy Society’s MRI unit."

Our world-leading research makes a genuine difference to the lives of people with epilepsy and we wouldn't be able to conduct any of it without the incredible fundraising from . Thank you for your support, and let's keep making a difference together! 💜🔬

Read the rest of the story: https://bit.ly/4dyNyRH

🔮 Did you know that today is Purple Day? It's a special day dedicated to raising awareness about epilepsy and supporting those affected by it. In the UK alone, 1 in every 100 people, that's 600,000 individuals, have epilepsy. Shockingly, 30% of them, around 187,000 people, suffer from treatment-resistant epilepsy.

💜 Join us in spreading awareness and making a difference this Purple Day! Discover how medicinal cannabis is providing relief and hope to people like Musa. Check out Musa's inspiring story and learn more about epilepsy awareness at intractable.org.uk/epilepsy-awareness-purple-day-musa.

💪 Together, we can make a difference and support those living with epilepsy. Let's raise our voices, share this message, and show our support for Purple Day! 💜

💜 Today is Purple Day, a special day dedicated to raising funds for those living with intractable epilepsy. Read more about Oliver's story.💜https://cannabishealthnews.co.uk/2022/12/09/charity-support-six-year-old-whose-access-medical-cannabis-under-threat/

Join us in making a difference by supporting our fundraising campaign. https://www.justgiving.com/campaign/100milestostop100seizures Your generous donations can help provide crucial resources, support services, and research initiatives for individuals and families affected by intractable epilepsy.

💜 By donating on Purple Day, you are directly contributing to improving the lives of those living with this challenging condition. Your support can help fund vital medical treatments, access to specialized care, and advocacy efforts.

💜 Every contribution, no matter how big or small, can have a significant impact. Together, we can make a difference and provide hope to those who need it most. Let's come together as a community and show our support for individuals living with intractable epilepsy.

💜 To make a donation, visit our website https://www.intractable.org.uk/events or click the link in our bio. Your generosity will help us continue our mission of raising awareness, providing support, and advocating for better treatments.

💜 Share this post and spread the word! Together, we can create a brighter future for those affected by intractable epilepsy. Thank you for your support! 💜

💜 Today is Purple Day, a day dedicated to raising awareness about intractable epilepsy and supporting those who live with this condition. You can read more about Mitchell's epilepsy journey by clicking on the link. 💜 https://www.intractable.org.uk/epilepsy-awareness-purple-day-2023-m

💜 Join us in spreading awareness and understanding about epilepsy by wearing purple and sharing your support on social media. Let's make sure everyone knows that epilepsy is not just a physical condition but also a daily challenge that affects millions of lives.

💜 Did you know that intractable epilepsy is a form of epilepsy that is resistant to treatment? People living with intractable epilepsy often face persistent seizures that significantly impact their quality of life. It's crucial that we come together to support and empower them.

💜 Help us make a difference by sharing your personal stories, experiences, or messages of support on social media using the hashtag . Let's create a sense of community and understanding for those affected by intractable epilepsy.

💜 Together, we can raise awareness, reduce stigma, and support research for better treatments. Let's show our solidarity and make a positive impact on the lives of those living with intractable epilepsy. 💜

The aftermath of having a seizure is sometimes described as experiencing post-workout pains and can cause sufferers to feel muscle aches. So, to replicate that feeling, we are challenging you to participate in our “100 miles to stop 100 seizures” campaign.

Take on the challenge of completing 100 miles on foot or by cycling over a two months period. You can participate individually or as a team by recording your progress through an app. Set up a fundraising page and encourage friends, family, and colleagues to sponsor your efforts. Together, we can stop 100 seizures and create a brighter future for children with intractable epilepsy.



https://www.intractable.org.uk/events

Medication shortages are seriously impacting lives up and down the country. Please tell us how they are affecting you in our short survey. We will use this data to urge the government to take action. 💜

Have your say: https://www.surveymonkey.com/r/PL3TJBD

SUDEP Action: Making every epilepsy death count Epilepsy Action

During , we want to shine a spotlight on our work to improve the lives of people with intractable and those who support them in the UK. This includes our efforts to provide funding for medicinal when prescribed. We are proud to celebrate the support and funding we have been able to provide over the last year. Without your continued support, none of this would be possible.

Absolutely! The use of medicinal cannabis treatment in preventing seizures caused by Hypoxic-ischemic Encephalopathy (HIE) is truly remarkable. HIE affects many children in the UK, and early intervention is crucial in providing them with the best possible outcomes.

Oscar's participation in the cannabis-based medicine trial highlights the potential benefits of this innovative approach in neonatal care. By preventing seizures, this treatment has the potential to protect the delicate brains of newborns and reduce the long-term impacts of HIE.

It is essential to continue researching and exploring new avenues for early intervention and treatment options for children with HIE. Every advancement in this field brings hope and the potential for improved outcomes for these children and their families.

Let's continue to support and advocate for early intervention and advancements in neonatal care to ensure a brighter future for all children affected by HIE. Together, we can make a difference! 💚🌱

https://www.facebook.com/share/jFnPt7NUbhcFHJDq/?mibextid=WC7FNe

Happy birthday to Oscar who was the first baby in the world to take part in a cannabis-based medicine trial after his birth four years ago.
Oscar was delivered by emergency caesarean section on 11 March 2020 and was transferred to the Neonatal Intensive Care Unit (NICU) to be treated for Neonatal Hypoxic-ischemic Encephalopathy (HIE).
He was given cooling therapy for 72 hours and within hours of his birth he was enrolled in a research study to receive a cannabis-derived medicine. The drug is delivered intravenously and aims to prevent seizures of babies with HIE.
Two babies at NNUH took part in the randomised study four years ago, which was funded and sponsored by GW Pharmaceuticals and supported by the National Institute for Health Research (NIHR).
His mum Chelsea Parodi, of Watton, Norfolk, said: “Oscar is doing absolutely amazing! He’s full of energy, he’s into hot wheels cars and he’s doing well at nursery school.”
“We often talk to him about how special he is and we have a photo book from when he was a baby, which he likes to look through. He was in hospital for eight or nine days and he was being monitored 24/7. He is doing really well and we are really grateful to the whole NICU team for their support during those difficult first days.”
The research that Oscar took part in when he was born was the first step that could one day lead to a cannabis-derived medicine being used routinely in neonatal care to help babies at risk of seizures and brain injury.
Professor Paul Clarke, Consultant Neonatologist at NNUH, said: “We are proud to have recruited the very first babies into this study and it is hoped this cannabis-derived medicine will be good for preventing seizures and protecting the brains of new-born babies with HIE.”

🌸💜 Happy Mother's Day! 💜🌸

Today, we want to celebrate the incredible strength and love of all the mums out there who care for children with intractable epilepsy. These amazing mums go above and beyond every day, nurturing and supporting their children some with severe disabilities.

On this special day, let's recognise that they are true superheroes, facing challenges with unwavering strength and resilience.

To all the mums who tirelessly advocate for their children, who provide comfort in times of uncertainty, and who work tirelessly to ensure their child's well-being, we salute you. Your selflessness and determination inspire us all.

Today, let us honour these extraordinary mums and remind them that their love and care make a world of difference in their child's life. 💕🌷

🌟 Celebrate Valentine's Day with a special message from the Intractable Epilepsy Charity! Did you know that St. Valentine is also the patron saint of epilepsy? 💜 Let's spread love and awareness this Valentine's Day by supporting those affected by intractable epilepsy. Share this post and help us raise awareness for this important cause!

https://www.intractable.org.uk/

💜 On this International Epilepsy Day, we stand in solidarity with individuals living with intractable epilepsy. Let's come together to show support, raise awareness, and break the barriers surrounding epilepsy. Together, we can make a positive impact and create a more inclusive and compassionate society. Join us in spreading the message 🎗 Shine a Light on Intractable Epilepsy. Join the movement. Supporting children and their families who are experiencing this condition.

https://www.intractable.org.uk/

📣 Attention! 📣

Many of the families we support have children and adults with sensory needs. It is crucial to be aware of the potential dangers associated with sensory balls.

We recently came across a heart-wrenching story where a concerned mother shared her experience after her son suffered an injury from a sensory ball.

Safety is our top priority, and we urge everyone to take precautions when using sensory balls or any other sensory equipment. It is essential to ensure that these items are safe, age-appropriate, and used under adult supervision.

Please share to ensure others are informed of the dangers.

Mum calls for change after son died from choking on sensory ball at day centre "You wouldn't think that something the size of the ball involved would be a choking risk"

🚨 Important Alert for Parents & Caregivers! 🚨

🔴 Raise Awareness: Prevent Choking Hazards in Children and adults with Sensory Needs! 🔴

Attention, parents and caregivers! We want to share an urgent message with you about the potential dangers associated with sensory balls and ensure you have the necessary knowledge to keep your children safe.

Recently, we learned about a tragic incident involving a young man named Louis, who suffered a choking incident while playing with a sensory ball. The care staff mistook his distress for a seizure, resulting in a devastating outcome. We are deeply saddened by this incident and committed to preventing similar incidents from happening to other children.

Sensory balls, although designed to provide comfort and stimulation, can pose a choking hazard if not used appropriately or under proper supervision. It's crucial for parents and caregivers to be aware of the potential risks and take necessary precautions to ensure the safety of their children.

Please follow Lou's Legacy on social media a new campaign set up by Louis family. Listen from 1:40:30 to hear from Louis mum. 🔗 https://www.bbc.co.uk/sounds/play/p0h4prcg

At Intractable Epilepsy, our mission is to support and empower families affected by epilepsy. We are committed to providing resources, education, and a support network for parents navigating the challenges of epilepsy and sensory needs.



Let's protect our children and create a safer environment for all. 💜

Anna Jameson - Joel Mitchell sits in (02/02/2024) - BBC Sounds Joel Mitchell sits in with trusted local news at breakfast and all the music you love.

🙏 Thank you for the Mention! 🌟

We would like to express our heartfelt gratitude for the mention of our charity and the important cause we support. Your support means the world to us and helps us raise awareness about treatment-resistant epilepsy.

Together, we can make a difference and bring hope to those who need it most. Thank you for helping us in our mission!

Team Intractable

Cannabis For Treatment-Resistant Epilepsy: How Long Must Our Children Suffer? [UPDATED] Children should not be allowed to suffer in 2024. By Ali Pink & Green. The year is 2018, and UK law is finally changed to allow access to patients resistant to other treatments to access cannabis to manage their symptoms. History is made and children such as Billy Caldwell and Alfie Dingley [1][2],....

❌❌❌Important Patient Information ❌❌❌

Sapphire Clinics has recently undergone a rebranding and is now known as Curaleaf Clinic. This change includes a new name and contact information. Patients can now reach out to Curaleaf Clinic at [email protected] or by calling 0207 459 4075.

🎉 As 2023 comes to an end, we want to express our heartfelt gratitude for everyone's unwavering support. Thanks to your generosity and donations, Intractable Epilepsy Charity funded every applicant this year. We couldn't have done it without you! 🙏

🏃‍♀ In January 2023, we kicked off the year with an exciting running challenge. In May, the Hartsbourne Golf Club hosted a fantastic charity golf event. In September, we witnessed the incredible dedication of five individuals running in the Great North Run. And in December, Buddy Mary ran a charity Christmas raffle. Every ticket sold, every step taken, and every swing made has made a difference in the lives of children with treatment-resistant epilepsy. 🏌‍♂

📅 As we enter 2024, stay tuned for upcoming events and opportunities to support our cause. Together, we can continue making a positive impact and helping children with treatment-resistant epilepsy. 💜

🎆 Wishing you a joyful and prosperous New Year from the entire Intractable Epilepsy Charity team! Let's make 2024 a year of hope and progress. 🌟

https://www.intractable.org.uk/

By studying brain tissue samples we have been able to establish a potential link between SUDEP and a depression of the central respiratory system following a seizure, and a link between serotonin pathways and the risk of SUDEP.

Learn more 👉 https://bit.ly/3SX9eiE

Thank you so much to , the and everyone who contributed to the raffle and bought tickets. We are overwhelmed at the amount raised for the Charity. Thank you so much ☺️

🌟 Sharing a Heartfelt Thank You Post 🌟

We are incredibly grateful for the support and generosity we have received from our amazing community. Today, we would like to share a heartfelt thank you post left by one of the families we have recently assisted through our intractable epilepsy charity.

These families face the immense challenge of affording the exorbitant costs of private prescriptions and medication for their children. It’s heartbreaking to know that they often have to make impossible choices, such as sacrificing basic necessities like food or heat, just to ensure their child receives life-changing medication.

The financial burden these families bear can be as high as £2,000 a month, solely to keep their children’s seizures under control. It’s a tremendous struggle, and it highlights the urgent need for assistance.

We wish we could do more, both in terms of funding and duration, to make an even bigger impact. Every contribution, no matter how small, makes a significant difference. If you have the means to help support our charity, we kindly ask you to visit our website and make a donation today. Your support will go directly towards providing much-needed relief to these families.

If donating isn’t feasible for you at the moment, we completely understand. However, you can still make a difference by sharing this post with your friends and family. Spreading awareness about our cause helps us reach more people who might be able to lend a helping hand.

Together, we can make a positive change in the lives of these families, ensuring that no child has to go without essential medication due to financial constraints. Thank you for your continued support, and let’s work together to make a difference!

💜💜💜

🌟 Sharing a Heartfelt Thank You Post 🌟

We are incredibly grateful for the support and generosity we have received from our amazing community. Today, we would like to share a heartfelt thank you post left by one of the families we have recently assisted through our intractable epilepsy charity.

These families face the immense challenge of affording the exorbitant costs of private prescriptions and medication for their children. It's heartbreaking to know that they often have to make impossible choices, such as sacrificing basic necessities like food or heat, just to ensure their child receives life-changing medication.

The financial burden these families bear can be as high as £2,000 a month, solely to keep their children's seizures under control. It's a tremendous struggle, and it highlights the urgent need for assistance.

We wish we could do more, both in terms of funding and duration, to make an even bigger impact. Every contribution, no matter how small, makes a significant difference. If you have the means to help support our charity, we kindly ask you to visit our website and make a donation today. Your support will go directly towards providing much-needed relief to these families.

If donating isn't feasible for you at the moment, we completely understand. However, you can still make a difference by sharing this post with your friends and family. Spreading awareness about our cause helps us reach more people who might be able to lend a helping hand.

Together, we can make a positive change in the lives of these families, ensuring that no child has to go without essential medication due to financial constraints. Thank you for your continued support, and let's work together to make a difference!

💜💜💜

https://www.intractable.org.uk/

Everyone

We would like to thank and and all the amazing small businesses that are involved. Thank you all so much for helping to raise money for our charity 🙏🏻

Please DM for tickets 😊