MedCan Family Foundation

Chris Adanté and Jay Mac have completed their 24hr non-stop live streamed set and raised £2,612 👏 A huge thank you from all of us at Medcan, to those who have contributed items for the raffle and donated or come along for support, it's been a great weekend of raising awareness of a cause at the heart of all we do, in particular the wider public. A final thank you to Gemma Hoskins, Laura Rycroft, Alix Carter, Chris Adanté and Jay for organising such a successful event. In fact so good, it's sown a seed for next summer and another Norfolk event (details in the new year) and Richard Pearce and Christina for hosting the after party. #epilepsy #savetheunicorn www.medcanfoundation.co.uk www.savetheunicorns.co.uk

A big thank you to everybody who has responded positively to my post last week about our fundraiser for MedCan Family Foundation. Raffle tickets are available (£5 per strip) until Saturday 31 August, 9pm. Please contact me to purchase, or pop into The Green Room at Epic Studios Broadcast. There are some brilliant prizes, with grateful thanks to those who have donated, including: 🥃 Clase Azul Tequila (worth £150) 🎭 Half term of lessons at Razzamataz Theatre School, Norwich 🍾 Champagne 🧺 Jarrold hamper (thanks to Quickfire Digital - Shopify Plus Agency ) 🥐 Bottomless prosecco brunch for two - Bond 🎟️ Pair of Cinema City tickets 🎤 Pair of Epic tickets 🫖 Cream Tea and Vintage Bentley trip for 2 – Maids Head Hotel, Norwich 🎮 £30 VR experience voucher – Norwich VR 🛍️ £25 Amazon voucher and more… I’m also delighted to say we have a fantastic auction prize, kindly donated by Cannon Clarke Architects, details of which can be found below: 3- night stay in a luxury caravan at California Cliffs, Scratby (worth over £500)*: https://lnkd.in/emsXKJqw *Subject to availability. Guests will need to bring towels and entertainment passes are excluded which can be purchased from reception. We will be accepting sealed bids for the auction until 9pm on Saturday. Please send your bid to [email protected]. Due to the value of this prize, a £400 reserve will apply. For a tear-jerking reminder of what this is all about, please click the video link below. Thank you.

Rare epilepsy syndromes in children are like unicorns because they are incredibly unique and often elusive. Just as unicorns are mythical creatures that are rarely seen, these epilepsy syndromes are uncommon and can be difficult to diagnose. Each child with a rare epilepsy syndrome has a distinct set of symptoms and challenges, much like how each unicorn is depicted with its own magical traits. The rarity and complexity of these conditions make them special and deserving of attention and understanding, highlighting the need for more research and support for affected families. 🦄💜 Medcan Family Foundation is a patient organisation working on behalf of families whom have a child diagnosed and living with complex severe treatment resistant epilepsy for whom the new generation of cannabis-derived medications represent a lifeline. Medcan’s founding principle is that no child should have their life cut short when there is simple and safe treatment available. #SAVETHEUNICORN www.savetheunicorns.co.uk

Join Us for an Inspiring Fundraiser in Norwich ! A reminder of our upcoming fundraiser event aimed at raising funds and increasing awareness of the work we do in supporting children diagnosed with a severe treatment resistant epilepsy. This is a fantastic opportunity for businesses and individuals in the Norwich area to come together and support a cause that truly matters. 📅 **Date: 30th August 🕒 **Time: 7pm 📍 **Location: Epic Studios, Norwich. Caring for a child with severe epilepsy and complex needs presents numerous challenges for families. These families often navigate a maze of medical appointments, treatments, and therapies, which can be both time-consuming and emotionally draining. The unpredictability of seizures adds a layer of constant vigilance and anxiety, impacting the entire family's daily life and routines. Additionally, the financial burden of private medical expenses and specialised care where the NHS are unable to support can be overwhelming. Social isolation is another significant issue, as families may struggle to find support and understanding within their communities. Despite these challenges, the resilience and dedication of these families are truly inspiring, as they continually strive to provide the best possible care and quality of life for their children. If you can't attend, please consider making a donation through our website https://lnkd.in/gZxBEnvg Thank you for your support! #NorwichFundraiser #SupportLocal #MakeADifference

Advanced cannabinoid medicines represent the next generation of personalised treatments. While we await additional clinical trials, existing clinical practice data strongly supports their efficacy in treating severe, drug-resistant epilepsy. However, there remains a lack of understanding within the epilepsy community regarding these medicines, leading to confusion over terminology used to describe their distinctions. The accompanying diagram dissects these medicines into their constituent components. CBD On its own known as an isolate, there is clinical trial data to prove efficacy and safety with one medicine (Epidyolex) approved for use through the NHS for three syndromes of childhood epilepsy. But it's also a primary component within advanced unlicensed cannabis medicines. Minor Cannabinoids Play an important role in pharmacodynamics within the human body. There are over 120 known minor cannabinoids with the following commonly found in advanced cannabinoid medicines, some with anti-seizure or anti-inflammatory properties; CBN, CBC, CBG, CBDV, THCV, CBDA, CBCV, THCA, CBGV. THC Commonly associated with the high through recreational use, THC does have medicinal properties and through clinical practice data gathered both in the UK, Canada and US has found improvements with seizure control when introduced in conjunction with minor cannabinoids. These three components collectively constitute advanced cannabinoid medicines. By adjusting the ratios or specific cannabinoids, we can tailor treatment to achieve the optimal outcome for each individual child. #epilepsy #education #autism

Medcan Family Foundation is a patient organisation working on behalf of families living with complex severe treatment resistant epilepsy for whom the new generation of cannabis-derived medications represent a lifeline for their children. Supporting over 700 families, Medcan’s founding principle is that no child should have their life cut short when there is simple and safe treatment available. #savetheunicorn

In 2019 an NHS review took place into the barriers accessing advanced cannabis medicines on the NHS for children diagnosed with severe forms of epilepsy. One recommendation was for the commissioning of a new service, RESCAS (Refractory Epilepsy Specialist Clinical Advisory Service). Collaborating with Epilepsy Action, we aim to assess awareness of the service and its effectiveness. If you’re a parent of a child diagnosed with uncontrolled epilepsy, we welcome your input using the link below —even if you were previously unaware of the service. https://lnkd.in/ewYwjr_c

Enhancing Access to Advanced Cannabis Medicines within the NHS: Recommendations for the New Government. With the assembly of a new government, there is an opportunity to reevaluate the existing barriers hindering access to advanced cannabis medicines through the National Health Service (NHS). As seasoned campaigners and experts in this complex field, we have engaged with various stakeholders over the years, including the Department of Health, neurologists, epilepsy nurses, the NHS and industry. However, our most profound insights have come from listening to the families of children who find themselves with no viable treatment options and left to watch their child suffer daily uncontrolled seizures. In light of this, we propose the following recommendations to the government. These measures aim to facilitate robust evidence collection while safeguarding children from resorting to illicitly sourced cannabis or prescriptions obtained outside the NHS. #savetheunicorn

Today marks a significant milestone: After months of campaigning by our chair Hannah Deacon, Six years today Alfie Dingley’s neurologist (Michael Barnes) received a schedule 1 license to prescribe an unlicensed advanced cannabis medicine for Alfie. This momentous occasion secured Alfie’s future and a huge relief to Hannah and her family. It also marked the beginning of what has now become a growing medical cannabis industry serving over 35,000 patients. However, when it comes to paediatric patients, the situation is quite different—a challenge we continually address. Presently, the UK has only two prescribers for paediatric neurological disorders. While fifty children receive private prescriptions at great cost, many more access cannabis through illicit channels without clinical supervision. Our mission remains steadfast: to transform this landscape. Our children may outlive us, yet they lack a voice to advocate for themselves to fight for their well-being once we’re gone. Access to NHS services is essential for their future, especially when their care falls under social services oversight. That’s why we continue to raise our voices and advocate on their behalf. The video below provides a look at major events from the past six years, highlighting the tireless efforts of families fighting for their children’s well-being.

Great news this week to learn of our nomination. The Medcan Family Foundation has exceeded expectations in recent years, establishing itself as an international hub for parents and industry professionals interested in cannabinoid medicines for rare neurological conditions in pediatrics. Congratulations to the other nominees, some whom we have collaborated over the years to elevate awareness and amplify the patient voice within the industry.