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24.01.2022 Fasted 5 day run #ketochallenge
23.01.2022 https://pubmed.ncbi.nlm.nih.gov/29804833/
23.01.2022 En excellent SUDEP resource. If you've not already done the SUDEP survey, please do here too (at the bottom of the page) https://ketocook.com/2021/01/16/sudep-study/
20.01.2022 We are considering training a seizure alert dog for our own peace of mind. https://wagwalking.com/training/alert-for-seizures.
17.01.2022 At 8.25 pm on the 31st August 2012 Molly gained her wings, her loss is felt far & wide but her everlasting presence is too. When you lose a child it is a wound ...that never heals but Molly & her family continue to selflessly help us. With the help of donations to her fund & the selfless donation of her brain researchers have made new discoveries about Dravet that will assist with better treatments & hopefully even a cure. Kellie, her family & friends work very hard to raise funds for research, to supply equipment to hundreds of children living with uncontrolled epilepsy & fund families attending conferences & family get togethers. They help us to come together & provide support & caring despite their endless grief. They live Moll's words "Be nice, be kind, be friendly, be brave." everyday even on the days when being brave seems too much to ask. Thank you Kell & family, for everything you are & everything you do, you are loved & appreciated beyond words xoxoxo And Molly, we will never ever forget you & we promise to keep trying to live up to your words <3 #BeNiceBeKindBeFriendlyBeBrave www.supportepilepsy.com.au/event/mollydravetfund See more
14.01.2022 https://investor.stoketherapeutics.com//stoke-therapeutics
14.01.2022 September is Childhood Cancer Awareness Month. > 15,270 kids in the U.S under the age of 19 will be diagnosed with cancer in 2020. > Cancer is the leading cause... of death by disease in children in the U.S. In 2020, 1,190 children under the age of 15 are expected to die from cancer in the U.S. > While survival rates have dramatically increased over the past 40 years, many childhood cancer remain terminal upon diagnosis and many more remain treatment resistant. > More than 40,000 children undergo treatment for cancer each year. Lifesaving childhood cancer treatments also increase the risk for early death from new cancers, heart disease, and lung disease in adult survivors. > It's estimated that there are over 429,000 adult survivors of childhood cancer living in the U.S. > By age 22, almost one-third of childhood cancer survivors will be clinically obese and age 50 will experience 17 chronic health conditions, on average. By age 30, childhood cancer survivors have a 700% higher risk of developing a life-threatening chronic condition than their non-cancer siblings. > Less than 4% of federal cancer research funding is devoted to over 100 forms of childhood cancer. Prostate cancer research alone receives almost twice that. > Childhood cancer does not feel rare to families facing these diseases. Hospital clinics are often crowded and pediatric healthcare is chronically underfunded. Integrative medicine and quality of life enhancing supportive care are often not reimbursable by insurance leading to not only disparities in care but also financial burdens and continued medical debt. > The financial burden of childhood cancer is often overwhelming to families. From the costs of co-pays to medication, travel, job loss, reimbursable care expenses and so much more, families carry debt long into bereavement and survivorship. > The statistics are indeed grim and difficult. Hope lies in the fact that these statistics are not destiny. We can move the needle for families facing childhood cancers. From directly funding childhood cancer research and integrative quality of life enhancing care to using YOUR voice to amplify this cause and raise awareness, YOU can make a difference. YOU matter. Please share, give, support and amplify! Join our movement at www.forkchildhoodcancer.org. (stats courtesy of cancer.org, cancer.gov, maxloveproject.org) #ChildhoodCancerAwarenessMonth
11.01.2022 Just pinched this from another page but this is so so true. Surround yourselves with those that ‘GET IT’ - it is the only way I have coped with the battles that I have been through these last few years Nicola xx
09.01.2022 https://www.facebook.com//Diet/permalink/4403466019725066/
09.01.2022 Post copied from Dawn Martinez wrt SUDEP research. This post is intended to reach families affected by SUDEP, but I encourage everyone who loves someone with epilepsy to read it. SUDEP is a scary topic for many of us, but it's too important to be ignored. An important survey is linked on my blog, KetoCook. If you know someone who has lost a loved one to SUDEP, please share this post with them so they may contribute. As a parent of a child with epilepsy, I can tell you that th...is is something that scares me to my core. Charlotte has had epilepsy her entire life, and it was not until she was about 5 years old that I first learned about SUDEP. We were already terrified of her having seizures at night, and the knowledge of SUDEP was almost enough to tip the scales of our mental health and sleep quality towards total dysfunction. My friend, Kristina Simeone is a basic science epilepsy researcher. Kristina studies mice with a genetic mutation associated with human SUDEP. I have found her knowledge in the field of SUDEP equally intriguing and comforting. We have shared many thoughts and conversations on this topic as well as others. In particular, we have often discussed the deep connection parents have to their children. The gut feelings parents feel, can’t explain, yet often act upon. These discussions led to a collaboration between myself and Kristina to design a survey based on those indescribable, yet powerful parental instincts. I am proud to be a small part in the quest to prevent SUDEP by helping Kristina design this survey. I HOPE that we find no one to answer it, but sadly, we know that is not the case. Please know that if you do answer this survey, Kristina and I are giving you the biggest, tightest, virtual hug possible. I have to believe we will be able to prevent SUDEP in the future Link to Blog & Study: http://bit.ly/KetoCookSUDEPsurvey Link to Survey only: https://bit.ly/SUDEPsurvey
07.01.2022 Brain Energy Rescue MHS 2019 speaker, Stephen Cunnane, recently published a very comprehensive review covering the connection between brain energy metabolism ...and neurodegenerative disorders, entitled Brain energy rescue: an emerging therapeutic concept for neurodegenerative disorders of ageing. Motivated by the rising prevalence of neurodegenerative disorders, such as Alzheimer’s disease (AD) and Parkinson disease (PD), this paper dives deep into a well-established pre-symptomatic hallmark of AD - reduced brain glucose metabolism - that is now a shared characteristic among other age-related neurodegenerative disorders. The brain consumes a large portion of our total energy, and demands a constant flow of fuel. For reasons not well understood, the aging brain can experience an energy deficit where glucose is no longer supplying the brain with enough fuel to maintain proper functionally. This energy deficit contributes to synapse loss, neuronal death, and neurotoxic protein accumulation, thus contributing to neurodegeneration, and in particular, AD. Though this paper discusses how the brain energy deficit can cause dysfunctional mitochondria and a failure to clear damaged mitochondria, a feature linked not only to AD, but PD, and other neurodegenerative disorders of ageing. The paper suggests, based on both preclinical and clinical research, that these metabolic defects can be overcome by ketone bodies serving as an alternative brain fuel that bypasses the impairments associated with glucose metabolism, while also acting as a signalling molecule that may improve mitochondrial function and reduce inflammation in the brain, among other contributing factors. In this way, ketone-based therapies may rescue the brain and delay the onset and/or progression of neurodegeneration. To learn more about this research visit https://www.nature.com/articles/s41573-020-0072-x
06.01.2022 Gene therapy research. https://www.businesswire.com//Stoke-Therapeutics-Announces Justin Vee Liu
04.01.2022 I see you taking your kid to therapy while your friends take their kids to football or ballet. I see you sneak out of the conversation when all your friends boa...st about achievements and exam notes. I see you juggle events and meetings. I see you sitting on the computer for hours investigating what your child needs. I see you make a bad face when people complain about what looks like nonsense. I see you disappear little by little but you keep going beyond for your family. I see you pull strength from weakness with a force you didn't even dream you had. I see you showing respect for teachers, therapists and medical professionals who help your child and help you. Watching you wake up early in the morning to do it all again after another chaotic night. I see you when you're on the edge of the precipice struggling to live. I know you feel invisible, like no one notices. But I want you to know that I see you. I see you push forward always. I see you choose to do everything you can to give your child the best care at home, school, therapy and the doctors. What you do matters. It's worth the struggle. On those days when you wonder if you can make it one more minute, I want you to know I see you. I want you to know that you are beautiful. I want you to know it's worth it. I want you to know that you are not alone. I want you to know that love is the most important thing, and that you are the best at it. And in those days when you see an improvement, those moments when hard work has its reward, and you can taste success, I'll see you then too. And I'm proud of you. Whatever day today... ...you're doing it right. And I see you. Alethea Mshar John Walker / Flickr
01.01.2022 https://www.elsevier.es/en-revista-neurologia-english-editi
