Emily Forrester

SAVING LENI CHILDREN’S BOOK NOW AVAILABLE ON AMAZON! Link: https://amzn.eu/d/0dELL2Vw Like most people, before Leni’s diagnosis we had never heard of Childhood Dementia, despite it impacting as many children and families as Childhood Cancer. Childhood Dementia isn’t just Sanfilippo Syndrome - there are over 140 different conditions that cause dementia in children. These conditions are cruel, relentless and heartbreaking. Most do not currently have treatments available despite the science existing to cure these conditions, and there is very little funding, research and support. We are working tirelessly to change that so that all children with dementia get the chance to live the life that they deserve. We are part of a first of its kind UK-wide collaboration (Childhood Dementia UK) headed up by the incredible LSD Collaborative - bringing together families, researchers, clinicians and patient associations across Childhood Dementia conditions, with the ultimate goal of Childhood Dementia being recognised by the UK Government and included in UK policy and healthcare planning strategies. This book is supported by the MPS Society and every penny will go directly to funding the work of Childhood Dementia UK. If anyone has any connections at local bookstores, libraries, schools or nurseries please let us know! Special thanks to our author Paula for giving all children with dementia a voice, our illustrator Laila for bringing Leni’s story to life, Danny for your invaluable guidance, and to all the families and children with dementia who came before us and those we continue to fight alongside. This is the start of a new chapter in the childhood dementia movement, and every book purchase brings us one step closer to saving Leni and children like her. As always, thank you for your support. Gus, Emily and Leni xxx

This week the Sanfilippo community has received the INCREDIBLE news that the first ever treatment for Sanfilippo Type A has been approved! The FAYUVI Gene Therapy (also known as UX111) from Ultragenyx has the potential to slow the devastating, irreversible neurological progression and loss of function associated with this heartbreaking condition, and in the youngest children it has the potential to stop it completely. It’s a miracle, and one that clinicians, researchers, patient associations, charities, pharmaceutical companies and families have been fighting for for over a decade. We couldn’t be happier for our Type A friends, and whilst we feel a deep sadness that this approval has come far too late for many children despite this treatment existing for many years, it gives us hope for the future. So… what does this mean for Leni? Many of you have reached out sharing this news, and we appreciate it so much! Unfortunately Leni will not be able to have this treatment, for a couple of reasons… 1. All treatments are type specific - this treatment is for children with Sanfilippo Type A, and Leni has Type B. 2. This treatment has only been approved by the FDA - which means at the moment it is only available in the US. International patients will need to self-fund with a price tag of $3.95 million. Although Leni isn’t able to have this treatment, we hope it is a sign of positive things to come for the wider Sanfilippo community and for Leni. Emily, Gus & Leni xx

Join the Leopards of Lime Street for a night of music, fun and fundraising for Leni's Life-Saving Treatment! When: Tuesday 19th May, 6-9PM Where: Balls Brothers, Minster Court, Mincing Lane, London, EC3R 7PP On Tuesday 19th May the Leopards will be playing our next gig along with special on-stage guest artists at Balls Brothers Minster Court. Join us 6-9PM for what promises to be an another cracking evening of fun and fundraising for a great cause. This gig is #leopardsforleni, supporting a cause close to our hearts as it is all about life-saving research to help the wonderful 2 year old child of a dear colleague, Gus Forrester. Gus will be joining us on the evening and we hope to see you soaking up the atmosphere and making a generous donation to the cause.  Donating just £5 would be terrific and like buying a virtual pint for Gus... Donating £10 would be fantastic and like buying a virtual pint each for our two special guests... Donating £20 would be incredible and like buying a pint virtual for each of the 4 members of the band! Donate more and we* may marry you! *we may all be already married... All the money you give goes to the cause, we (the band) volunteer their time rehearsing and playing. One of Leni's favourite things in the world is music, but without urgent access to treatment she will lose the ability to sing and dance - and we can't sit back and let that happen! Leni has been diagnosed with Sanfilippo Syndrome Type B (MPSIIIB), also known as Childhood Dementia – a rare and severe neurodegenerative genetic condition. Children with this condition have a defect in a single gene that prevents them from breaking down a sugar molecule called heparan sulfate, causing toxic waste to build up in the brain and body. Sanfilippo Syndrome is unimaginably cruel. Children develop relatively ‘normally’ with no obvious symptoms until they are around two years old, then over a short amount of time they lose all skills once learned, experience severe behavioural challenges, hyperactivity, insomnia that can last for days, seizures, a total loss of cognitive and motor function, and a premature death in their early to mid teens, as well as many other horrific symptoms. Sanfilippo is relentless and leaves nothing untouched. There is currently no approved treatment or cure. However there are promising clinical trials on the very near horizon that have already been proven to be incredibly effective. Everyone is working very hard to make these treatments urgently accessible to those who need it, and Leni's parents, Emily and Gus, are working tirelessly to try to secure access to treatment for Leni. Funding is part of what is standing in their way. With Leni’s condition weeks and months really matter, with the toxic waste accumulating every single day, so the issue is urgent. It is a condition that no child should have to go through; you can read more about her condition at her main fundraiser and you can follow her journey on Instagram or TikTok. Don't know the Leopards? The Leopards are a bunch of mates from the Market, playing for you (our mates from the Market!) raising money for great causes. Who are the LOLS? Peter "howling" Savage (Lloyd's), keys & vocals, and a founder (10+ years) member! Danny "screaming" May (WCL) guitar & vocals  Andrea "sticks" Gerada (Lloyd's), drums Marek "bald-man-bass" Baldy (Mojio & Co), bass & vocals Plus for this night only, special guests: Andy "Reacher" Davie (Lloyd's) Ed "Flying fingers" Borland (InsureX) See you on the 19th!