Listen in TOMORROW at 10am in #HoustonTX or watch the LIVE stream of these incredible speakers & #HDexperts on Facebook! Check out our HIPE panel below! #Help4HDHIPE2024 🔹Dr. Erin Furr-Stimming: #HDSA Center of Excellence at UTHealth, McGovern Med School Founder & Director 🔹Dr. Victor Sung: Director of the UAB #HuntingtonsDisease #Clinic 🔹Patricia Arnold: Senior Social Worker for the Center for the Treatment of Pediatric #NeurodegenerativeDisease (CTPND) 🔹 Sandra Sands-Arnez: TTI #HomeHealthCare Owner & Administrator 🔹 Amber McCarthy: HDSA Center of Excellence #SocialWorker at UTHealth Houston 🔹 Leslie Dunnington: Medical #Genetics Division Assistant Professor at McGovern Med at UTHealth Houston 🔹 Jason Johnson: #CommunicationsDisorder Specialist
Epidemic. My team and I are not only focused on those who already have this awful disease, but also in developing a way to prevent this disease in high risk patients. Today we shared our data on how SNK01 could be potentially used as a preventative therapy for patients found to have four elevated biomarkers that were recently shown (UK Biobank study) to be highly correlative for developing dementia and for which our treatment has been found to help reduce. #alzheimers #parkinsons #nkcells #neuroinflammation #neurodegenerativedisease #endalz
Thank you to the 12th annual Alzheimer’s and Parkinson’s Drug Development Conference for the invitation to come and speak. It was great to share more about the work we are doing with SNK01 (enhanced natural killer cells) in Alzheimer’s and Parkinson’s disease and how they improve CSF levels of amyloid, tau, and alpha-synuclein proteins as well as reduce neuroinflammation suggesting it could be used to treat numerous other neurodegenerative diseases also associated with these proteins. I also shared our data on how SNK01 might be used as a preventative therapy for patients found to have four elevated biomarkers that were recently shown (UK Biobank study) to be highly correlative for developing dementia and for which our treatment has been found to help reduce. #alzheimers #parkinsons #nkcells #neuroinflammation #neurodegenerativedisease #endalz
Parkinson’s disease can start 20-50 years prior to diagnosis, making it crucial to identify red flags as early as possible. My early nonmotor symptoms can be traced back 20+ years, and many dismissive doctors failed to diagnose them. @lauriemischley , ND PhD MPH has dedicated her career to researching lifestyle and nutritional support as a means to managing and slowing Parkinson’s progression. Her podcast on an integrative approach to early detection and treatment of Parkinson’s disease is highly recommended. Making modifications to diet and excersise PRIOR to a diagnosis can delay diagnosis which translates to better quality of life! This is hope- we have some control over an incurable disease✨ Until we find a cure, it’s important to educate medical professionals on nonmotor symptoms so people can implement lifestyle changes early on. Simple changes like the following the MIND diet, glutathione and other supplemental support, and exercise alone have been shown to benefit the progression of neurodegenerative disease pathology. Personally, I have listened to this podcast many times and often on the days I feel defeated by this disease. Each time I listen to it, I hear something I missed previously. It is my dose of HOPE🏆 Link to podcast in Linktree #youngonsetparkinsons #parkinsonsawarenessmonth #pdlookslikeme #parkinsonslookslikeme #yopnetwork #yopdwomen #yopdadvocate #parkinsonsadvocacy #brainhealth #neuroscience #neurohealth #brainmatters #Parkinsonsawareness #neurodegenerativedisease
Comment below.❤️ - 📸 Via 📷: Unknown, tag to credit! - Tag someone who needs to see this💙 - 👉𝖄𝖔𝖚 𝖈𝖆𝖓 𝖔𝖗𝖉𝖊𝖗 𝖎𝖙 𝖔𝖓 𝖙𝖍𝖊 𝖑𝖎𝖓𝖐 𝖒𝖞 𝖍𝖔𝖒𝖊 𝖕𝖆𝖌𝖊🛍️ - - - - #yopd #carpaltunnel #parkinson #neurological #stroke #neurology #braininjury #neurorehab #stroketreatment #parkinsonsdiseaseawareness #neurodegenerativedisease #parkinsonscommunity #parkinsonawareness #recoverfromstroke #livingwithparkinsons #parkinsonbuilding #parkinsonsdiseasesupport #parkinsonsresources #pdwarrior #hopeandpossibility #newrorehab #rebootingthebrain #parkinsonismo
Fancy meeting room! I’m up next 😊 #biomarkers #neurodegenerativedisease #alzheimersdisease
I didn't die! With it's extremely important to exercise. Like, if I don't devote time to movement development every day, then I can.not.move. Today I went farther, longer than I've gone since diagnosis. I know it's not much if I were to compare it to our hiking days, or exploring mountain tops when we lived in the RV, but I feel like I've reached the top of Mt. Everest! I thank the Lord for getting me through this part of my exercise routine. Now for speech therapy.' Cre: @qtskid . . . - 📸 Via @qtskid - Tag someone who needs to see this💙 - 👉𝙂𝙚𝙩 𝙜𝙞𝙛𝙩𝙨 𝙗𝙮 𝙩𝙝𝙚 𝙡𝙞𝙣𝙠 𝙖𝙩𝙩𝙖𝙘𝙝𝙚𝙙 𝙞𝙣 𝙩𝙝𝙚 𝙗𝙞𝙤❤️ - - - - #yopd #carpaltunnel #parkinson #neurological #stroke #neurology #braininjury #neurorehab #stroketreatment #parkinsonsdiseaseawareness #neurodegenerativedisease #parkinsonscommunity #parkinsonawareness #recoverfromstroke #livingwithparkinsons #parkinsonbuilding #parkinsonsdiseasesupport #parkinsonsresources #pdwarrior #hopeandpossibility #newrorehab #rebootingthebrain #parkinsonismo
#ParkinsonsFacts: It's the 2nd most prevalent neurodegenerative disease after Alzheimer's, yet there's no cure. We teamed up with @parkinsondotorg for a walk recently, raising awareness and funds for research. Explore how geroscience offers hope in our latest blog by clicking on the link in our bio! #ParkinsonsAwareness #NeurodegenerativeDisease #Geroscience #ParkinsonsResearch #ParkinsonsCommunity
Interesting new research from the University of Helsinki demonstrates that progressive neurodegenerative diseases can be triggered by viral infections. Scientists report that a specific gene variant affecting the mitochondria disturbs cellular antiviral defense responses. The results implicate that viral infections can trigger and modify symptoms of neurological diseases in subjects carrying genetic sensitivity. The idea that external factors, such as viral infections, can modify the appearance and age of onset of neurological diseases is new and interesting, and it may help with the development of new therapies. Learn more at the link in our bio. 💚 #MitoCanada . . . . . #neurodegeneration #neurodegenerativedisease #neurologicaldisease #viralinfections #viralinfection #virus #mito #mitochondria #mitochondrialdisease #mitochondrialdiseases #mitochondrialdiseaseawareness #mitochondrialhealth #mitosupport #mitotherapy #raredisease #research
I am so excited with this new program for the Panhandle region! New services for people affected with Parkinson and Parkinsonism in this area! The Parkinsonism Multidisciplinary Team Clinic. We lunched this clinic last Thursday and I am so grateful with my entire team. Your hard work and dedication truly keep the momentum going! Estoy muy contento de compartir con ustedes un nuevo programa para toda nuestra área en el Panhandle. Nuevos servicios para todas las personas afectadas con la enfermedad de Párkinson o Parkinsonismos. La clínica multidisciplinaria en Parkinsonismos. El lanzamiento de la clínica fue el pasado jueves y estoy muy agradecido con todo mi equipo. Su dedicación y arduo trabajo han sido fundamentales para este inicio. #dr.enriqueurrea #hablandodepapa #movedisorder #neurodegenerative #neurodegenerativedisease #enfermedadesraras #neurologia #neurologista #parkinsonismo #parkinsonism #movimientosanormales #caregiver #enfermedadesneurodegenerativas #neurogenetica #neurociencia #parkinsonismoatipico #parkinsonismo #parkinsonsawareness #parkinsonsdisease #endparkinsons #nomasparkinson #parkinsonawarenessmonth #parkinsonmexico #parkinsoncolombia #parkinsonusa #enfermedadesneurodegenerativas
A fabulous morning spent with Parkinson’s Elche art group. Today’s workshop was all about positive and negative space. #art #artworkshop #positivespace #negativespace #creativetime #parkinson #parkinsonssupport #parkinsonsdisease #parkinonsartgroup #parkinsonelcheartgroup #neurodegenerativedisease #parkinsonscommunity #parkinsonawareness #livingwithparkinsons #parkinsonsdiseasesupport #drawing #sketching
Střípky z kontrolní hospitalizace. Tak jsme prošli mnohá vyšetření a konzilia, ze kterých Alexík většinu prospinkal. Zkrátka v noci jsme byli vzhůru a ve dne Alexík spinkal. Naštěstí jsme spolubydlící na pokoji měli jen celkem dva dny😜 A když už byl vzhůru při vyšetření, tak to tedy byla celkem náročná akce🤫🤪 (ne vždy). Je to zkrátka bojovník, no. Jelikož jsme tam opravdu dlouho nebyli, tak jsme měli celkem radost ze známých tváří lékařek, lékařů i sestřiček.🥰🤗 Já osobně měla i radost z toho, že jsem cítila, že je všechny těšilo jak Alexík vyrostl a hlavně jaké pokroky udělal.🥰🙏 No, ale domů jsme se vraceli s dalšími dg. a prášečky navíc. Že je Alexík v předčasné pubertě, jsem si samozřejmě všimla👀😲, a to samotné není žádná tragédie, ale že bude v souvislostí s tím diagnostikována ještě centrální hypotyreóza a centrální hypocortizilismus (teď nevím jestli to píšu správně) tak to jsem neočekávala. Alexík ale hned dostal prášečky, vše nám bylo vysvětleno (byla jsem tedy klidnější) a také jsme dostali termíny na další vyšetření. Tak nám držte pěsti, ať ta vyšetření dopadnou co nejlépe 🙏🥰✨🍀 V závěru velké díky lékařkám a lékařům za jejich pochopení, vstřícnost a péči 🙏❤️🥰 A také děkujeme sestřičkám ze 3.C a z 1. B 🙏❤️ S přáním všeho dobrého Alice a Alexík 🍀 #raredisease #soustredeni #mentalniretardace #kombinovanepostizeni #jemnamotorika #hrubamotorika #ostrostzraku #ocnivady #ucimesehrou #handicapovani #bojsnemoci #vlastnisvet #snijdersblokcampeausyndrome #doaopa1plus #chd3 #opa1 #dominantopticatrophy #mitochondrialdisease #cellularrespiration #epilepsy #mentalretardation #vzacni #neurodegenerativedisease #vicediagnoz #jsemnasveterad #mamsvujsvet #stastnedite #happykids #centralnipredcasnapuberta #centralnihypotyreoza
💥 Scientists have discovered certain RNA molecules in nerve cells in the brain that last a lifetime without being renewed. These findings provide insights into the aging process of the brain and related degenerative diseases. While most cells in the human body are regularly renewed, cells in the heart, pancreas, and brain do not renew throughout life. Researchers identified a key component of aging brain, certain types of ribonucleic acid (RNA) that protect genetic material. These long-lived RNAs, referred to as LL-RNA, play a crucial role in regulating chromatin and maintaining the stability of nerve cells. 📷 Kateryna Kon / @sciencephotolibrary ⭕ Institute of Science and Technology Austria #longevity #neuroscience #agingbrain #RNA #genetics #neurodegenerativedisease #brainhealth #cellrenewal #scientistdiscoveries #LLRNA #geneticstability #brainresearch #cellregeneration #agingprocess #lifetimemolecules
Meet our HIPE Panel experts! Link in bio to register. 💙💜💙 #Help4HDHIPE2024 #HoustonTX #HuntingtonsDisease 🔹Dr. Erin Furr-Stimming: #HDSA Center of Excellence at UTHealth, McGovern Med School Founder & Director 🔹Dr. Victor Sung: Director of the UAB Huntington's Disease #Clinic 🔹Patricia Arnold: Center for the Treatment of Pediatric #NeurodegenerativeDisease (CTPND) Senior Social Worker 🔹 Sandra Sands-Arnez: TTI #HomeHealthCare Owner & Administrator 🔹 Amber McCarthy: HDSA Center of Excellence #SocialWorker at UTHealth Houston 🔹 Leslie Dunnington: Medical #Genetics Division Assistant Professor at McGovern Med at UTHealth Houston 🔹 Jason Johnson: #Communications Disorder Specialist Can't be there in person? Check our Facebook page for video streaming of the event.
Discover the Latest Advances in Diagnostic Tools for Neurological Conditions! 💊🧬 🗓️ Date: Wednesday, April 24th 🕒 Time: 6:30pm, ET 🔗 Registration: link in story Join leading expert Dr. Padma Mahant of CND Life Sciences and Synapticure's Drs. Liz Ferluga and Jaime Hatcher-Martin who will discuss the groundbreaking role of Alpha-synuclein skin biopsy, The Syn-One Test®, in diagnosing #neurodegenerativedisease. Gain insights into its applications in identifying #Parkinson’s disease (PD), Lewy Body Dementia ( #LBD), Multiple Systems Atrophy ( #MSA), and Primary Autonomic Failure ( #PAF). Don't miss this opportunity to stay at the forefront of neurological diagnosis.
April 12, 2024 - Research published in Rheumatic & Musculoskeletal Disease found that patients with rheumatoid arthritis (RA) who were taking biological disease-modifying antirheumatic drugs (DMARDs) had a 24% lower risk of dementia. Written by @veronicaa_salib https://pharmanewsintel.com/news/dmards-for-rheumatoid-arthritis-linked-to-lower-dementia-risk #biologics #biosimilars #chronicdisease #dementia #neurodegenerativedisease #risk #dementiarisk #DMARDs #arthritis
Como cuidadores debemos aprender a cuidarnos y reconocer que nuestra función va cambiando de acuerdo a las diferentes etapas de la enfermedad. Al principio solo acompañamos…pero es en donde mas debemos conocer sobre la enfermedad y aprender a reconocer los cambios que se presentan. Toda la familia es importante y se debe involucrar. Con el tiempo nuestro rol pasa a ser más activo y es en donde debemos entender que también necesitamos ayuda, que no debemos olvidar nuestra salud, que se vale decir que estamos cansados, agobiados, deprimidos etc., y que se vale pedir ayuda. El ejercicio, la dieta balanceada, y los grupos de apoyo, junto con más conocimiento…son muy importantes. Nunca estamos solos! #dr.enriqueurrea #hablandodepapa #movedisorder #neurodegenerative #neurodegenerativedisease #enfermedadesraras #neurologia #neurologista #parkinsonismo #parkinsonism #movimientosanormales #caregiver #enfermedadesneurodegenerativas #neurogenetica #neurociencia #parkinsonismoatipico #parkinsonismo #parkinsonsawareness #parkinsonsdisease #endparkinsons #nomasparkinson #parkinsonawarenessmonth #parkinsonmexico #parkinsoncolombia #parkinsonusa #enfermedadesneurodegenerativas
Most patients with REM sleep behavior disorder (act out dreams) have Lewy bodies, abnormal aggregations of protein that develop inside nerve cells. Lewy bodies contribute to Parkinson’s disease, Lewy body dementias, and some other neurodegenerative disorders. Important to note not everyone with REM disorder will go on to have Neuro degeneration but the majority will. https://www.bumc.bu.edu/camed/2020/09/18/cte-contact-sports-play-linked-to-rem-sleep-behavior-disorder/#:~:text=Most%20patients%20with%20REM%20sleep,that%20develop%20inside%20nerve%20cells. #rem #remsleepbehaviordisorder #remsleep #parkinsons #lewybodies #lewybodydementia #neurodegenerativedisease
Please remember to be kind! Cre: @how.u.feeling . . . - 📸 Via @how.u.feeling - Tag someone who needs to see this💙 - 👉𝙂𝙚𝙩 𝙜𝙞𝙛𝙩𝙨 𝙗𝙮 𝙩𝙝𝙚 𝙡𝙞𝙣𝙠 𝙖𝙩𝙩𝙖𝙘𝙝𝙚𝙙 𝙞𝙣 𝙩𝙝𝙚 𝙗𝙞𝙤❤️ - - - - #yopd #carpaltunnel #parkinson #neurological #stroke #neurology #braininjury #neurorehab #stroketreatment #parkinsonsdiseaseawareness #neurodegenerativedisease #parkinsonscommunity #parkinsonawareness #recoverfromstroke #livingwithparkinsons #parkinsonbuilding #parkinsonsdiseasesupport #parkinsonsresources #pdwarrior #hopeandpossibility #newrorehab #rebootingthebrain #parkinsonismo
To mark World Parkinson's Day, in today's post neuropsychologist Ramón Fernández explains what Parkinson's disease is, its symptoms and the effectiveness of cognitive rehabilitation in PD. Find it in the STORY! #WorldParkinsonsDay #Parkinson #neurodegenerativedisease #neuropsychologist #cognitiverehabilitation #mildcognitiveimpairment #cognitivedeficits #neuropsychologicaltest #cognitivebehavioraltherapy #cognitivetraining #videogames #virtualreality
Move your #neurodegenerativedisease discovery forward with Cell Signaling Technology (CST) offerings. Visit the booth at #neurizons2024 and learn how custom solutions from CST can be tailored to your individual needs. https://cst-science.com/wmkb8e
On April 11th annually, 🗓️ we commemorate World Parkinson’s Day to amplify understanding surrounding Parkinson’s disease. This day also serves as a tribute to Dr. James Parkinson, the pioneer credited with identifying the inaugural case of this neurodegenerative condition in 1817. More than 10 million people have Parkinson’s disease, says the Parkinson’s Foundation. 📈 But many folks only know what they’ve heard or seen about famous people like Muhammad Ali and Michael J. Fox who have the disease. 🌟 Learn about Parkinson’s: 🔍 Be the best ally by researching on trusted sites like Parkinson’s Foundation or reading books about the condition. 🤝 Volunteer to help: Offer support with errands, meals, driving to appointments, or daily tasks. 🏃♂️ Stay active: Encourage exercise together like walking, dancing, or yoga. 💬 Foster normalcy: Focus on topics beyond the disease in conversations to maintain their sense of self. 🏠 Socialize: Combat isolation by taking them out for dinner or a movie. 👂 Listen: Offer a supportive ear for their emotions and challenges. ⏳ Be patient: Understand the impacts on speech and movement, and seek professional help if needed. 🌍🧠 World Parkinson’s Day holds great importance as it provides a stage to spread awareness about Parkinson’s disease and its effects on people and their families. It’s a chance to emphasize the importance of research for finding a cure and enhancing the lives of those living with Parkinson’s. 🚀 #ParkinsonsAwareness #ResearchMatters #ParkinsonsDisease #Parkinsons #NeurodegenerativeDisease #MovementDisorders #Neurology #BrainHealth #CureParkinsons #ParkinsonsAwareness #MentalHealth #HealthCare
📣 Today marks the #worldparkinsonsday! Parkinson’s disease (PD) is the second most common neurodegenerative disease after Alzheimer’s disease. The two major groups of symptoms of PD are motor symptoms, such as tremors and rigidity, and non-motor symptoms, such as neuropsychiatric symptoms. Learn more and download our new infographic 👆 Follow the link in bio. 🔗 #WorldParkinsonsDay #NeurodegenerativeDisease #Neuropsychiatry #Neuroscience #Symptoms
💬How many myths surround illnesses... Today, April 11th, we celebrate World Parkinson's Day and want to debunk some of the beliefs surrounding this disease. Our goal is to raise awareness about this neurodegenerative condition that affects millions of people worldwide🌍🧬 . . . #ParkinsonsAwareness #WorldParkinsonsDay #NeurodegenerativeDisease #HealthAwareness #Healthcare #FightParkinsons #Health #Wellbeing #Wellness
We made it on time for our first day back to school 🏫 @goldenwarriordood is going to be so sad today with no one to hang out with except his mom 😔 #schoolday
Loved playing outside with my puppy today ☀️🐶💙
#alzheimers #apoe #genetics #dementia #brainhealth #neurology #healthawareness #geneticrisk #alzheimersawareness #neuroscience #neuropsychology #research #healtheducation #prevention #dementiaprevention #dementiaawareness #endalz #riskfactors #memoryloss #cognitivehealth #neurodegenerativedisease #mentalhealth #caregiversupport #alzrisk #neurodegeneration #dementiarisk #genetictesting #cognitivedecline #brainaging #amyloid
Having already introduced Dr. Douglas Pacheco, we would now like to welcome the second of the 6 JPI Fellows: Dr. Stella Glasmacher is neurologist and researching prognosis of patients with Friedreich ataxia, a rare #neurodegenerativedisease, using #machinelearning. This disease causes difficulty walking, a loss of coordination in the arms and legs, and impaired speech that worsens over time. Symptoms generally start between 5 and 20 years of age. Her research project is part of the #MedST #ProfileArea in the Translational Neurodegeneration section headed by Prof. Kathrin Reetz where she took up her new position in January 2024. Before she came to @uniklinik_rwth_aachen, she secured a competitive academic foundation training post and, subsequently, a research fellowship at the @edinburghuniversity, UK. The #JPI Fellowship Program is designed to attract and support stellar researchers with international experience. The aim of the program is to develop a personal T-shaped profile at @rwthaachenuniversity and to expand interdisciplinary collaborations within the University. The profile areas wish Stella Glasmacher every success in realising this promising and important project!
Amyotrophic lateral sclerosis- more commonly known as ALS – is a progressive neurological disease characterised by the degeneration of the motor neurons in the spinal cord and the brain responsible for voluntary movement and breathing. Individuals will also experience muscle twitching, muscle atrophy, cramping, spasticity, and difficulty chewing or swallowing. The primary motivation for individuals with ALS to exercise is that it helps retain muscle mass and maintain flexibility, thereby allowing the individual an increased quality of life and independence than they would otherwise have. Swipe right for some exercise suggestions. Exercises: - Band wrist twist (red band). - Obstacle course. - Treadmill. - Alternating dumbbell bicep curls. - Seated KB marches. ⚠️ It is important to see a medical professional to find out the root cause of your symptoms so that proper training can be implemented. 🚫 Do not try these on your own post-surgery or during injury recovery without consulting a medical professional. #LouGehrigsDisease #ALS #AmyotrophicLateralSclerosis #MotorNeuronDisease #NeurodegenerativeDisease #ALSexercise #ExerciseForALS #KeepMovingALS #ALSsupport #HealthyLiving #ActiveLifestyle #FitnessMotivation #MobilityForALS #ExerciseTherapy #Biokinetics #biokineticistsa #MovementForLife #movementspecialist #exercisespecialist #ExerciseForSeniors
💡Confused about all the #dementia #caregiving jargon? Visit the Dementia Map #Glossary for simple, 3-sentence explanations like this one about #NeurodegenerativeDisease? More are being added, so check back often! Need a specific one added? Let us know! https://ed.gr/drksg
Did you know? While associated with aging, neurodegenerative diseases can affect young minds as well. To learn more, watch our session on Clinical Neurology and earn one certified shadowing hour. Dive into your medical journey with Teleshadowing! - - - #teleshadowing #virtualshadowing #premed #prehealth #aspiringdoctors #clinicalneurology #neurodegenerativedisease #neurology #neurologist #psychiatry #psychiatrist #psychology #clinicalpsychology #neuroscience #neurologicaldisorders #brain #braindisorders
Vyfouknutá vajíčka 🥚🤪 Alexík chtěl barvit štětečkem... dobře, akrylovky jsou také fajn. Alexík ale hrozně rád míchá barvičky, nejlépe všechny dohromady 🤪👀😂 Tak jako jsem si naivně myslela, že vytvoříme nějakou hezkou dekoraci 🤔 no, a teď abych vymyslela jak udělat tu slepičku, která měla průjem 😂🤣😅😉 Hlavní je, že ho to bavilo👏👍🍀🥰 #raredisease #soustredeni #mentalniretardace #kombinovanepostizeni #jemnamotorika #hrubamotorika #ostrostzraku #ocnivady #ucimesehrou #handicapovani #bojsnemoci #vlastnisvet #snijdersblokcampeausyndrome #doaopa1plus #chd3 #opa1 #dominantopticatrophy #mitochondrialdisease #cellularrespiration #epilepsy #mentalretardation #vzacni #neurodegenerativedisease #vicediagnoz #jsemnasveterad #mamsvujsvet #stastnedite #happykids
Set you my alarms for this Saturday @ 9am EST! Join TeleShadowing on your neurology journey as we discuss the complexities of neurodegenerative diseases. Expand your medical by earning 1 certified shadowing hour! - - - #teleshadowing #virtualshadowing #premed #prehealth #aspiringdoctors #clinicalneurology #neurodegenerativedisease #neurology #neurologist #psychiatry #psychiatrist #psychology #clinicalpsychology #neuroscience #neurologicaldisorders #brain #braindisorders
That’s a wrap on Dante’s 3rd ice skating season. He had so much fun at his @sabah_inc celebration tonight and watching all the performances ⛸️ #curespg52 #spasticparaplegia #spg52 #raredisease #rarediseaseawareness #buffalony #buffalove #neurodegenerativedisease #ultrarare #patientwarrior #iceskating #adaptiveskating #adaptiveathlete #adaptivesports
Nějak nás to vařeníčko baví 😉 tak alespoň procvičujeme ovoce, zeleninu i tvary a barvy🥰 Modelingu jsem nestihla vyfotit, ale příště 🤪 #raredisease #soustredeni #mentalniretardace #kombinovanepostizeni #jemnamotorika #hrubamotorika #ostrostzraku #ocnivady #ucimesehrou #handicapovani #bojsnemoci #vlastnisvet #snijdersblokcampeausyndrome #doaopa1plus #chd3 #opa1 #dominantopticatrophy #mitochondrialdisease #cellularrespiration #epilepsy #mentalretardation #vzacni #neurodegenerativedisease #vicediagnoz #jsemnasveterad #mamsvujsvet #stastnedite #happykids
Kuchyňská hodinka😉😃se sestřičkami 🥰🤗🤩🍀 #raredisease #soustredeni #mentalniretardace #kombinovanepostizeni #jemnamotorika #hrubamotorika #ostrostzraku #ocnivady #ucimesehrou #handicapovani #bojsnemoci #vlastnisvet #snijdersblokcampeausyndrome #doaopa1plus #chd3 #opa1 #dominantopticatrophy #mitochondrialdisease #cellularrespiration #epilepsy #mentalretardation #vzacni #neurodegenerativedisease #vicediagnoz #jsemnasveterad #mamsvujsvet #stastnedite #happykids
Did you know we can reduce the risk of Alzheimer’s by up to 45% with exercise? 🏃♀️Exercise is one of the best-validated ways we have to increase the production of new neurons in our brain, and to help prevent dementia. The most relevant benefits of exercise for cognition: ✅ Reduces insulin resistance: A key player in Alzheimer's disease. ✅ Increases ketosis: Boosts BDNF (brain-derived neurotrophic factor) production, regenerating brain cells. ✅ Expands hippocampus size: Vital for memory and shrinks in Alzheimer's. ✅ Improves vascular function: Crucial for neuronal and synaptic health. ✅ Reduces stress: Alleviates Alzheimer's-promoting inflammation ✅ Enhances sleep: A necessity for cognitive health. ✅ Boosts neurogenesis: Increases survival of newborn neurons. ✅ Elevates mood Optimal exercise for a sharper mind involves a blend of: Aerobic Exercise: Jogging, walking, spinning, or dancing. Weight Training: Preferably four or five days a week. Duration: Aim for 45 to 60 minutes each day. Read more about the benefits of exercise for brain health in the link in bio 🤗 #alzheimers #cognitivedecline #brainhealth #exerciseformind #cognitivefitness #dementia #cognitivehealth #cognition #bredesenprotocol #staysharp #optimizebrainhealth #neurodegenerativedisease #optimalbrainhealth #foodforyourbrain #braintips #brainhealthmatters #alzheimersawareness #alzheimersprevention #inflammation #sleepbetter #guthealth #integrativemedicine #preventalzheimers #reversecognitivedecline #brainawarenessmonth #ketosis #bdnf #hippocampus #neuronalhealth #stressreduction
YOUR CELLS MIGHT NEED A DETOX 😰 9️⃣ WAYS TO SUPPORT CELLULAR DETOXIFICATION Detoxification at the cellular level is a complex and ongoing process that your body naturally performs. Cells detoxify through a variety of processes aimed at removing waste products, harmful substances, and maintaining cellular health.💪🏼 The main cellular detoxification processes are: 1️⃣ Metabolic Detoxification: Cells have enzymes that break down and metabolize toxins, drugs, and foreign substances. 2️⃣ Oxidative Stress Defense: Cells produce antioxidants like glutathione and superoxide dismutase (SOD) to neutralize harmful free radicals and reduce oxidative stress. 3️⃣ Autophagy: A cellular process that involves the removal and recycling of damaged cellular components, eliminating dysfunctional components and preventing the accumulation of toxic aggregates that cause dysfunction. 5️⃣ Lysosomes: Cellular organelles containing enzymes that break down waste materials and cellular debris. 6️⃣ Excretion: Cells excrete waste products and toxins through various means, including urine, feces, sweat, and the respiratory system. 7️⃣ Glymphatic System: In the brain, the glymphatic system is responsible for clearing waste products, including beta-amyloid, a protein associated with neurodegenerative diseases. You might not be surprised that a holistic and long-term approach to maintaining a healthy lifestyle is the most effective way to support cellular health.🙏🏼 What happens when you detox at a cellular level? It may feel like MAGIC.✨ Save the slides for how to do it... REFERENCES: PMID: 22228951, PMID: 2672474, PMID: 28866100, PMID: 29849692, PMID: 24136970, PMID: 20646222, PMID: 29609501, PMID: 32714204, PMID: 32249021, PMID: 32360589, https://www.sciencedirect.com/science/article/pii/S1021949816301958 ) #SerenaLoves ♥️ #CellularHealth
This week marks the end of our neurodegenerative disease unit! Here’s some quick info on the different conditions we learned about! #neurodegenerativediseaseawareness #neurodegenerativedisease #parkinsonsawareness #pdawareness #multiplesclerosisawareness #msawareness #amyotrophiclateralsclerosisswareness #alsawareness #alzheimersawareness #dementiaawareness #occupationaltherapy #occupationaltherapystudent #ot #otstudent #neurodivergent #neurodivergentwomen #neurodiversity #neurodiversityaffirming
Comment below.❤️ - 📸 Via 📷: Unknown, tag to credit! - Tag someone who needs to see this💙 - 👉𝙂𝙚𝙩 𝙜𝙞𝙛𝙩𝙨 𝙗𝙮 𝙩𝙝𝙚 𝙡𝙞𝙣𝙠 𝙖𝙩𝙩𝙖𝙘𝙝𝙚𝙙 𝙞𝙣 𝙩𝙝𝙚 𝙗𝙞𝙤❤️ - - - - #yopd #carpaltunnel #parkinson #neurological #stroke #neurology #braininjury #neurorehab #stroketreatment #parkinsonsdiseaseawareness #neurodegenerativedisease #parkinsonscommunity #parkinsonawareness #recoverfromstroke #livingwithparkinsons #parkinsonbuilding #parkinsonsdiseasesupport #parkinsonsresources #pdwarrior #hopeandpossibility #newrorehab #rebootingthebrain #parkinsonismo
Když se nám nechce učit u stolu, tak alespoň příšerky na počítači 🤪👏🥰🍀 Pokud jste si všimli, tak ano, u pexesa nám trošičku cukal koutek... Tak se u Alexíka projevují takové ty "malé" epileptické záchvaty. Hlavní je, že nenabírají na intenzitě, neopakují se v pravidelných sériích, nestrácí vědomí a jsou kraťoučké.🙏❤️🍀 #raredisease #soustredeni #mentalniretardace #kombinovanepostizeni #jemnamotorika #hrubamotorika #ostrostzraku #ocnivady #ucimesehrou #handicapovani #bojsnemoci #vlastnisvet #snijdersblokcampeausyndrome #doaopa1plus #chd3 #opa1 #dominantopticatrophy #mitochondrialdisease #cellularrespiration #epilepsy #mentalretardation #vzacni #neurodegenerativedisease #vicediagnoz #jsemnasveterad #mamsvujsvet #stastnedite #happykids
#BrainAwarenessWeek | VITAMINS & THE BLOOD-BRAIN BARRIER 😬🧠 The blood-brain barrier is a crucial cellular barrier that safeguards the brain by preventing pathogens or toxins from accessing it.🚫 There are ways to protect the strength of the blood-brain barrier and help to minimize the damage done by toxins and particles that can cross. There are also beneficial molecules that cross the blood-brain barrier to improve cognitive function!💯 Interestingly, vitamin B12 has been shown to help protect the BBB.👌🏼 In one study, vitamin B12 & B6 treatment improved blood-brain barrier function in patients with mild cognitive impairment.✨ In another study, vitamin B12, by enhancing cholinergic function and potentially restoring the blood-brain barrier, offers a promising avenue for treating Alzheimer’s disease, surpassing conventional medications in gathering cholinergic receptors and addressing AD-related pathology.👏🏼 Learn more about protecting the Blood Brain Barrier: https://serenaloves.com/the-blood-brain-barrier-your-brains-personal-bodyguard/ REFERENCES: https://pubmed.ncbi.nlm.nih.gov/35523375/, https://pubmed.ncbi.nlm.nih.gov/12826740/ , https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6132681/ , https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9164284/ #SerenaLoves ♥️ #BrainHealth
A small clinical trial involving 12 patients with Parkinson’s disease has reported no safety concerns with a newly developed human stem cell-based therapy. The therapy – called TED A9 – was delivered as a cell transplant injected directly into the brain of the participants. Dr Rachel Montgomery writes more about this novel therapy on our website: https://www.progress.org.uk/human-stem-cell-based-therapy-for-parkinsons-disease-proven-safe/ Don’t miss out on all the latest news and reviews – subscribe to BioNews for free on our website: https://www.progress.org.uk/subscribe/ #parkinsonsdisease #stemcells #neurodegeneration #neurodegenerativedisease #dementia #clinicaltrial
Do you know someone who has been diagnosed with multiple sclerosis? Since actress Selma Blair was diagnosed in 2018, her openness in sharing about her diagnosis has played a role in putting a spotlight on a disease that affects many. March is Multiple Sclerosis Awareness Month. Take time to learn more about MS this month by reading our posts highlighting this disease. #myfaultygene #multiplesclerosis #multiplesclerosisawareness #selmablair #neurodegenerativedisease #spoonie #multiplesclerosisawarenessmonth
AFTD's CEO, Susan L-J Dickinson, speaks out against harmful clickbait headlines perpetuating misconceptions about FTD. Let's combat stigma together! Share your story using #EndDementiaStigma to promote understanding and compassion in the comments below 👇. Your voice matters. 🔴 Or click the link in our bio to download images/text to use on social media to help spread the word.
EMF exposure is associated with the development of neurodegenerative diseases like Parkinson's and Alzheimer's. #parkinsonsdisease #alzheimersdisease #neurodegenerativedisease #emfprotection #emfsafety #emfs #perthnaturopath #kalamundanaturopath #naturopathy #naturopathicmedicine #healingarts #holistichealth #preventativemedicine
👉Übersicht über neurodegenerative Krankheiten Neurodegenerative Krankheiten stellen ein Spektrum von Störungen dar, die durch den progressiven Abbau der Struktur und Funktion des Nervensystems gekennzeichnet sind. Häufige Beispiele sind Alzheimer, Parkinson und Multiple Sklerose. Diese Zustände treten vorwiegend bei älteren Menschen auf, können aber auch jüngere Bevölkerungsgruppen betreffen. Neurodegenerative Krankheiten sind heimtückisch und führen oft zu behindernden Symptomen, die sich im Laufe der Zeit verschlimmern. Trotz bedeutender Fortschritte in der medizinischen Forschung bleiben diese Krankheiten aus klassischer medizinischer Sicht unheilbar, wobei die Behandlungen größtenteils auf die Symptomkontrolle und die Verbesserung der Lebensqualität der Patienten ausgerichtet sind. #phytonährstoffe #makronährstoffe #wertvollenährstoffe #krankheit #krankheiten #autoimunkrankheit #neurodegenerativedisease #mikronährstoffe #nährstoffe
One way which the importance of the brain reveals itself to us is by the symptoms of neurodegenerative diseases, which are characterised by the eventual degradation of the nervous system, resulting in varied motor and cognitive symptoms. Swipe through to learn more! . . #brainawarenessweek #neurodegenerativedisease #alzheimers #parkinsons #als #neuroscience #beauvilfoundation
Congratulations to Drs. Joseph Castellano and Herbert Zheng Wu on receiving a Collaborative Pairs Pilot Project Award (Cycle 2) (Phase 1) through the Chan Zuckerberg Initiative's Neurodegeneration Challenge Network! CZI’s Neurodegeneration Challenge Network brings together experimental scientists from diverse research fields, along with computational biologists and physicians, to accelerate fundamental neuroscience and #NeurodegenerativeDisease research that leads to an in-depth understanding of healthy brain function and the development of new strategies for treatment and prevention of neurodegenerative disorders. Drs. Castellano and Wu will be one of 64 interdisciplinary teams that are taking innovative approaches to study fundamental #Neuroscience and #Neurodegenerative diseases. Through their study, Molecularly-Defined Neural Cells Altered by #Alzheimers Disease Pathology, they will establish the impact of #AlzheimersDisease pathology on molecularly-defined neural cells during cognitive tasks using sequentially-coupled calcium imaging with spatial transcriptomics. Again, CONGRATULATIONS! 👏 🎊 Read more about the second cycle of Chan Zuckerberg Initiative's Neuroscience Collaborative Pairs Pilot Projects via the link in our bio. #FriedmanBrainInstitute #NashNeuroscience @mountsinaibrain @mountsinaipsych @sinaigradschool @mountsinaibrainstudents @mountsinaineurosurgery @mountsinaineurology @ChanZuckerbergIntititive
Nancy at the PSP Walk in Marco Island last weekend. @curepsp_ we has a great time seeing old friends and meeting new people. We also were happy to meet the team from #universityofmiami who are new to the PSP family and hopefully be involved in a study this fall - #PSPAwareness - #CurePSP - #ProgressiveSupranuclearPalsy - #PSPSupport - #NeurodegenerativeDisease - #MovementDisorder - #PSPResearch - #PSPCommunity - #RareDisease - #Tauopathy #health #neurology #rarediseases
Nancy at the PSP Walk in Marco Island last weekend. @curepsp_ we has a great time seeing old friends and meeting new people. We also were happy to meet the team from #universityofmiami who are new to the PSP family and hopefully be involved in a study this fall - #PSPAwareness - #CurePSP - #ProgressiveSupranuclearPalsy - #PSPSupport - #NeurodegenerativeDisease - #MovementDisorder - #PSPResearch - #PSPCommunity - #RareDisease - #Tauopathy #health #neurology #rarediseases
Happy to share my latest publication. Honored to work with such talented researchers. Hope this treatment of motor fluctuations in patients with advanced Parkinson disease will be available in USA soon! This is an excellent review of our experiences for a successful treatment. This is a helpful summary for our patients and caregivers. Feliz de compartir con ustedes mi última publicación. Muy honrado de haber trabajado con tan talentosos e importantes investigadores. Espero que este tratamiento para las fluctuaciones motoras en pacientes con Enfermedad de Párkinson avanzada este disponible pronto en USA y en todos nuestros países. Esta es una excelente descripción de nuestras experiencias para un tratamiento exitoso. Seguro de que esta información será de mucha utilidad para nuestros pacientes y cuidadores. Siga este link para descargar el artículo: Follow this link to download the paper: https://doi.org/10.1016/j.prdoa.2024.100239 #dr.enriqueurrea #hablandodepapa #movedisorder #neurodegenerative #neurodegenerativedisease #enfermedadesraras #neurologia #neurologista #parkinsonismo #parkinsonism #movimientosanormales #caregiver #enfermedadesneurodegenerativas #neurogenetica #neurociencia #parkinsonismoatipico #parkinsonismo #parkinsonsawareness #parkinsonsdisease #endparkinsons #nomasparkinson #parkinsonawarenessmonth #parkinsonmexico #parkinsoncolombia #parkinsonusa #enfermedadesneurodegenerativas #defeatmsa #parkinsonsuk #parkinsonvenezuela
We are so excited to announce the collaboration between Copper Rose Weddings and Events and the ALS Association for a spectacular fundraiser gala on October 26, 2024! Join us in supporting a great cause and making a difference. Save the date! 🎉 This particular event hold a special spot in our hearts. Even if you cannot find time from your busy October Saturday, please take a moment to go to their website to see what they are all about. I cannot stress this enough and tell you how important this Fundraising Gala is for those living with ALS. One step closer to trying to find a cure for this unpredictable disease! Journeytoacure.org ALS.org Although weddings are our niche, we love coordinating events as well! We love to be able to keep up with our event planning knowledge to best serve our clients! Book us for your next special event today! @als #CopperRose #ALSAssociation #FundraiserEvent #copperroseweddingsandevents #journeytoacure #ALS #neurodegenerativedisease #nocure #collaboration #eventcoordinating #specialevent
Only became aware of friction's presence in bedding and clothing since developing Parkinson's Disease ? It makes dressing and turning over in bed at night a major time-consuming effort . It's often the little things that cause the greatest irritation... grrr #frustration #challenge effort dressing #sleeping #insomnia #friction #clothing #perception #dreams #lives #artist #art #parkinsonsdisease #parkinsons #neurodegenerativedisease
Ups... Huggymu upadla nožička🤪 operace úspěšná, Alexík asistoval a pak měl radost, že je Huggy zase celý 😉🍀 No tak snad Alexík pochopil, že Huggy není vrtule🤪🤣 #raredisease #soustredeni #mentalniretardace #kombinovanepostizeni #jemnamotorika #hrubamotorika #ostrostzraku #ocnivady #ucimesehrou #handicapovani #bojsnemoci #vlastnisvet #snijdersblokcampeausyndrome #doaopa1plus #chd3 #opa1 #dominantopticatrophy #mitochondrialdisease #cellularrespiration #epilepsy #mentalretardation #vzacni #neurodegenerativedisease #vicediagnoz #jsemnasveterad #mamsvujsvet #stastnedite #happykids
Thankful that our new house has lots of room for Bennett to get through in his wheelchair. We built a bungalow and widened all doorways so he has access to every room in the house. #wheelchairaccessible #accesiblehome #accesibilitymatters #complexneeds #neurodegenerativedisease #irf2bpl #specialneneedsfamily
Understanding the Mechanisms Behind Neurodegenerative Diseases Keeping cells healthy requires “housekeeping” processes known as autophagy, in which damaged and non-functional proteins are degraded by enzyme-containing organelles called lysosomes. As people age, autophagy becomes less efficient, leading to neurodegenerative diseases such as Parkinson’s and Alzheimer’s when protein aggregates reach lethal levels in brain neurons. These diseases are also associated with alterations in lysosomal pH and cause lipids—particularly cholesterol—to accumulate in lysosomes. In recent studies of the fruit fly Drosophila, Andreas Jenny, Ph.D., in collaboration with Gustavo MacIntosh, Ph.D., have characterized a protein, dubbed Drosophila Lamp1, that is related to the LAMP1/2 proteins needed to maintain autophagy in humans. The researchers have found that Lamp1 deficiency increases the acidity of Drosophila lysosomes and impairs the lysosomes’ ability to transport and metabolize lipids; these defects resemble those resulting from the loss of the gene GBA1, which causes Gaucher disease and is the most common genetic abnormality associated with Parkinson’s disease. The National Institute on Aging has awarded Dr. Jenny and colleagues a five-year, $3 million grant to identify the connection between Lamp1 function, increased lysosomal acidity, and abnormal lipid metabolism. Using a Drosophila model of Parkinson’s disease, the scientists will also investigate how those processes are connected to neurological disorders. The research may lead to novel strategies for treating or even preventing neurodegenerative disorders. Dr. Jenny is professor of developmental and molecular biology, of genetics, and of medicine at Einstein, a member of the National Cancer Institute–designated Montefiore Einstein Comprehensive Cancer Center, and a member of the National Institute on Aging-supported Einstein Nathan Shock Center of Excellence. Dr. MacIntosh is professor of biological chemistry at Iowa State University. #autophagy #neurodegenerativedisease #drosophila #molecularbiology #genetics #medicine #research #science #EinsteinMed #AlbertEinsteinCollegeofMedicine
Indian Teen Invents Gadget to Transform Dementia Care – Out of Concern for His Grandmother By Andy Corbley Hemesh Chadalavada was 12 years old when one summer evening in 2018, he observed his grandmother go to the kitchen to make tea for herself. When she exited the room, she had left the gas on. It shocked Hemesh, but also drove him to convert the hours spent on YouTube learning about robotics into a solution that would help ensure accidents like this could be detected if he weren’t there—a question he found himself asking several times. Jayasree was diagnosed with Alzheimer’s the year before, and in 2023 passed away from the delibating neurodegenerative disease. By then, Hemesh had invented the Alpha Monitor, a badge-like monitoring device that sends out alerts if the person wearing it wanders off or falls. #neurodegenerativedisease #alzheimer #dementiacare #monitoringdevice #robotics
Indian Teen Invents Gadget to Transform Dementia Care – Out of Concern for His Grandmother By Andy Corbley Hemesh Chadalavada was 12 years old when one summer evening in 2018, he observed his grandmother go to the kitchen to make tea for herself. When she exited the room, she had left the gas on. It shocked Hemesh, but also drove him to convert the hours spent on YouTube learning about robotics into a solution that would help ensure accidents like this could be detected if he weren’t there—a question he found himself asking several times. Jayasree was diagnosed with Alzheimer’s the year before, and in 2023 passed away from the delibating neurodegenerative disease. By then, Hemesh had invented the Alpha Monitor, a badge-like monitoring device that sends out alerts if the person wearing it wanders off or falls. #neurodegenerativedisease #alzheimer #dementiacare #monitoringdevice #robotics
Hledáme čísla 😉 👏🎉🍀 A mám velkou radost, protože 1+1=2👍👏🙏🎉🥰🍀 Můžete vidět v reels👀 Do dnes to totiž bylo 1 a 1 je 1 a 1.🤫 #raredisease #soustredeni #mentalniretardace #kombinovanepostizeni #jemnamotorika #hrubamotorika #ostrostzraku #ocnivady #ucimesehrou #handicapovani #bojsnemoci #vlastnisvet #snijdersblokcampeausyndrome #doaopa1plus #chd3 #opa1 #dominantopticatrophy #mitochondrialdisease #cellularrespiration #epilepsy #mentalretardation #vzacni #neurodegenerativedisease #vicediagnoz #jsemnasveterad #mamsvujsvet #stastnedite #happykids
🧠 Neurodegenerative/progressive diseases don’t care if you’re not feeling well, if you have minor aches/pains, if your life is too busy to find time to take care of yourself. They don’t exhibit empathy or give you a pass. They only get stronger that day. ‼️ You MUST find a way to combat this each and every day. Wake up 30 minutes earlier in the morning and exercise, get outside and go for a walk/hike (maybe add a weighted vest/backpack or ankle weights?!). 🤔 Now, it’s not a perfect world, sometimes we’re sick and it is what it is. Build up that reserve so that a few days here and there don’t cause a major setback! (Hint: You can even practice other domains while you’re sick such as Brain HQ, Luminosity, Sudoku, etc.). 💪 Do what you must to allow your body to get up out of bed, up from the toilet, ground, etc… giving you the ability to remain independent and enjoy your time with your family and friends, preserving the quality of life you’ve always pictured for yourself. 🙌 YOU CAN DO IT! One day at a time, one step at a time, one moment at a time, and one thought at a time. #motivation #parkinsonsdisease #neurodegenerativedisease #movementdisorder #neurology #medicine #healthcare #health #wellness #fitness #exercise #choice #opportunity #move #walk #justdoit #noexcuses #weightlifting #strength #power #multiplesclerosis #alzheimer’s #dementia #balance #life #independence
Gary Plummer ex @nfl football player visited the @amydis_eye team at their San Diego laboratory. He shared how critical it was for him to learn as early as possible about his #dementia diagnosis. The team was moved by the conversation and the potential impact they can make with their early detection solution for #brain related diseases. #earlydetection #nevertoolate #neurodegenerativedisease
Thank god I can still make art or something like it! #art #inspiration #appropriation #artist #whitstablelife #whitstable #parkinsonsdisease #parkinsonsuk #neuroscience #neurodegenerativedisease #frustration #diminishing #dwindling #dawdle #artistwithparkinsons #frustration #inconsistency
I used to feel very hesitant about stepping out into the world and pursuing the mission and purpose called upon me because I was worried that it would look like I was self-serving or that I was on a selfish quest. However, I have come to realize and recognize that my own experiences living with a rare neurological disease are gifts that others also living with these health conditions need to know. I also know currently that the mainstream healthcare system is not willing to step from the BIG PHARMACEUTICAL BOX and present other areas of treatment to patients. And so it is that with the good grace of God that I have been lead to a gate and a path to help others find a way to walk down. xox #onmission #onpurpose #withgodsgrace #neurologicaldisorder #neurodegenerativedisease #multiplesystematrophy #mainstreamhealthcare #bigpharmalies #awareness #acceptance #support
I haven’t shared about Bennett’s disease for a while but today is Rare Disease Day and it’s important to talk about our rare warrior to bring awareness to him and all the others battling rare diseases. Bennett has IRF2PBL. It’s a terrible neurodegenerative disease with no cure. There’s very little info regarding the disease and what we do have is honestly just doctor’s guesses. They say the disease kicks in anywhere between 2 and 7 but we have met others who didn’t show signs until much later. They have no idea how long they have once the regression does kick in but they do know children will lose ability by ability until they are left a prisoner in their own bodies. Machines breathing for them. It’s such a terrible thing to think about which is why it’s so hard to share. So we take it day by day and give him what we can while we can. We love you Benny! #rarediseaseday #careforrare #irf2bpl #neurodegenerativedisease #epilepsywarrior #raredisease