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Foundation For Prader-Willi Research
United States
เข้าร่วมเมื่อ 15 พ.ค. 2014
The mission of the Foundation for Prader-Willi Research is to ELIMINATE the challenges of Prader-Willi syndrome through the advancement of research. High-quality research will lead to more effective treatments and an eventual cure for this disorder. By working together, we intend to free our loved ones from the burdens of PWS, allowing them to lead full and independent lives.
What Can I Expect If I Participate in the COMPASS PWS Clinical Trial?
The COMPASS PWS study is now enrolling participants ages 5 to 30 years old with Prader-Willi syndrome who struggle with hyperphagia.
This informational webinar shares details about this study and what you can expect should you choose to participate.
Learn more about the trial design, participation details, and eligibility.
This informational webinar shares details about this study and what you can expect should you choose to participate.
Learn more about the trial design, participation details, and eligibility.
มุมมอง: 133
วีดีโอ
Pitolisant Clinical Trial Informational Webinar
มุมมอง 994 หลายเดือนก่อน
Harmony Biosciences has initiated its Phase 3 study of Pitolisant and is now enrolling individuals with Prader-Willi syndrome ages 6 and up who struggle with excessive daytime sleepiness. During this webinar, you will learn more about the trial design, participation details, and eligibility.
What's Happening in PWS Research? Spring 2024.
มุมมอง 3625 หลายเดือนก่อน
FPWR Director of Research Programs, Theresa Strong, provides an update on What's Happening in PWS research and details how your research dollars are being put to work! Learn more about our most recent round of funded projects, outcomes from previously funded projects, and new opportunities in PWS research.
Take Action: Fundraise with FPWR
มุมมอง 526 หลายเดือนก่อน
Fundraising 101: Explore the who, what, when, where, why, and how when it comes to fundraising. You can do it, FPWR can help!
NNZ-2591 as a Potential Treatment for Prader-Willi Syndrome
มุมมอง 3417 หลายเดือนก่อน
Neuren Pharmaceuticals is conducting a Phase 2 study of NNZ-2591 to evaluate its safety, tolerability, and efficacy in treating children, ages 4 to 12, with PWS. Watch this presentation to learn more about the trial design, participation details, and eligibility.
FPWR Conference 2024
มุมมอง 2389 หลายเดือนก่อน
Join us September 27th and 28th, 2024, at the Grand Hyatt Atlanta www.fpwr.org/conference?hsCtaTracking=43ebf96f-be62-474a-b208-c40adb2d1c5e|10025ea0-719c-4947-97ea-acdf6031f830
What's Happening in PWS Research? Fall 2023 Update.
มุมมอง 55811 หลายเดือนก่อน
FPWR Director of Research Programs, Theresa Strong, details on our most recent round of funded projects, outcomes from previously funded projects, and new opportunities.
KITE-PWS Phase 2 Clinical Trial
มุมมอง 219ปีที่แล้ว
KITE-PWS is an ongoing Phase II trial of RGH-706 for people with PWS ages 17 and up. The aim of the study is to evaluate an experimental drug, RGH-706, effect on hyperphagia in adults with PWS.
What's Happening in PWS Research, Spring 2023
มุมมอง 559ปีที่แล้ว
Learn more about what is happening in PWS research. This recorded presentation provides an update on ongoing research activities, new outcomes from the FPWR grant program, and a brief description of each of our newly funded grants.
Fighter Jhett Classic Golf Event 2022
มุมมอง 188ปีที่แล้ว
Interview with Fighter Jhett Classic host, Jen Lee
Community Voices of Hope
มุมมอง 173ปีที่แล้ว
We're not just waiting and hoping for treatments. We're aggressively doing something about it. Join our mission to eliminate the challenges of Prader-Willi Syndrome at FPWR.org
INVESTIGATION OF CEREBELLAR CONTROL OF STRIATAL DOPAMINE ACTIVITY AND FOOD INTAKE IN PWS
มุมมอง 126ปีที่แล้ว
INVESTIGATION OF CEREBELLAR CONTROL OF STRIATAL DOPAMINE ACTIVITY AND FOOD INTAKE IN PWS
ASSESSING DGKK SIGNALING PATHWAY AS A SNORD116 TARGET IN THE PATHOGENESIS OF PWS
มุมมอง 89ปีที่แล้ว
ASSESSING DGKK SIGNALING PATHWAY AS A SNORD116 TARGET IN THE PATHOGENESIS OF PWS
IMPAIRMENT OF NEURONAL MORPHOLOGY AND FUNCTION IN SNORD116 PRADER-WILLI SYNDROME MICE.
มุมมอง 103ปีที่แล้ว
IMPAIRMENT OF NEURONAL MORPHOLOGY AND FUNCTION IN SNORD116 PRADER-WILLI SYNDROME MICE.
shRNA/AAV9 GENE THERAPY FOR THE TREATMENT OF PRADER-WILLI SYNDROME
มุมมอง 562ปีที่แล้ว
shRNA/AAV9 GENE THERAPY FOR THE TREATMENT OF PRADER-WILLI SYNDROME
TARGETING THE OREXIN SYSTEM TO TREAT PRADER-WILLI SYNDROME ASSOCIATED HYPERPHAGIA
มุมมอง 200ปีที่แล้ว
TARGETING THE OREXIN SYSTEM TO TREAT PRADER-WILLI SYNDROME ASSOCIATED HYPERPHAGIA
ENGINEERING EPIGENOME EDITING TOOLS FOR SUSTAINED REACTIVATION OF MATERNAL PWS GENES
มุมมอง 63ปีที่แล้ว
ENGINEERING EPIGENOME EDITING TOOLS FOR SUSTAINED REACTIVATION OF MATERNAL PWS GENES
PWS SMART-START - A RANDOMIZED CLINICAL TRIAL.
มุมมอง 73ปีที่แล้ว
PWS SMART-START - A RANDOMIZED CLINICAL TRIAL.
ROLE OF FAT SENSING IN THE ALTERED FEEDING BEHAVIOR AND METABOLIC PHENOTYPE OF PRADER-WILLI SYNDROM
มุมมอง 38ปีที่แล้ว
ROLE OF FAT SENSING IN THE ALTERED FEEDING BEHAVIOR AND METABOLIC PHENOTYPE OF PRADER-WILLI SYNDROM
CELLULAR AND MOLECULAR BASIS FOR OBESITY IN PWS
มุมมอง 88ปีที่แล้ว
CELLULAR AND MOLECULAR BASIS FOR OBESITY IN PWS
IN THEIR OWN VOICES: DEVELOPING A SELF-REPORT MEASURE OF HYPERPHAGIA FOR INDIVIDUALS WITH PWS
มุมมอง 77ปีที่แล้ว
IN THEIR OWN VOICES: DEVELOPING A SELF-REPORT MEASURE OF HYPERPHAGIA FOR INDIVIDUALS WITH PWS
NON-CODING RNAS IN NEURONAL DIFFERENTIATION AND PWS
มุมมอง 50ปีที่แล้ว
NON-CODING RNAS IN NEURONAL DIFFERENTIATION AND PWS
DEFINING CELL-TYPE SPECIFIC SIGNATURES AND DYSREGULATED PATHWAYS FROM BLOOD AND BRAIN IN PWS
มุมมอง 24ปีที่แล้ว
DEFINING CELL-TYPE SPECIFIC SIGNATURES AND DYSREGULATED PATHWAYS FROM BLOOD AND BRAIN IN PWS
What's Happening in PWS Research - Fall 2022
มุมมอง 4872 ปีที่แล้ว
What's Happening in PWS Research - Fall 2022
VNS for PWS Clinical Trial: An Important Next Step
มุมมอง 6092 ปีที่แล้ว
VNS for PWS Clinical Trial: An Important Next Step
NICE SHARE VIDEO
very frightening problem in real life
Does it function with congenital leptin deficense?
Guanfacine and buspirone have helped my autistic adhd son for sure.
Can I get your contact number doctor
This is awesome, thank you for your work.
I have a son 28 years old. And was negative of Prader Willis /Angelman Syndrom genetic testing..what should I do to have him diagnose with the Schaaf-Yang? I am in Italy.
Mai bahut paresan hu sir
Plz sir mera karwa dijiye na teeth ka stem cell
How can you get help if your child has hyperphagia but a different genetic disorder?
How mild of a decrease in blood pressure does guanfacine cause?
c.10%
I take 0.5mg of the short acting guanfacine two times a day (AM and PM) and it has dropped my BP ~10 points
Any update on the research: "Wake promoting effects of oxytocin?" This is all very interesting having a 4mo old daughter with PWS. We have been supplementing with Oxytocin and it seems to have quite a bit of impact on her.
Dr. Scam...mell??
Stem Cells the teeth When is this technique applied?
Combining Intuniv with Adderall has been a total game changer for me
How do you take them? Separately, together, in am or pm, etc? I stopped adderall because of the bad side effects I had when I was on it, but now I just started to take guanfacine, I haven’t noticed much of difference. Do you take gunfacine every day or as needed?
Fantastic. Parent of child of UPD PWS child.
2:50 How they say Setmalanotide
So, if you set up positive reinforcement before hand and it is systematic it is not a quid pro quo? It is not bribery? Yo our hubris masking as self confidence is advocacy of treating children as a tabular rasa of manipulable programmable objects. Your contribution in the perpetuation of trauma and abuse is quite notable!
Mam my children have growth harmone problem his old is 6 years can we use
Our GPD Team has made GPD (Gorgeous Pocket Dictionary )Curriculum and Teaching Materials which fits for DLD Children up to Level Elementary School, we are helping and experiencing with other children who has problems in speaking and academic for around 4 years and keep on moving with different level of DLD and they are moving forward all , catching up their school peers. My son has severe DLD. He barely didn't talk up to 8yo...now he talks, writes and counts in the age of almost 11
Glad to find this when looking, thank you.
Am the happiest woman in the world, with the help of DR RORPOPOR HERBAL on TH-cam natural supplements I have been cured totally from hormone , I now have my own baby God bless YOU...🤓🤓
This seemingly matter of fact no nonsense presentation is entirely misguided. First of all, "The Principles of Learning" in accordance to behavioral based methodologies (Learning Theory) is not partly but entirely antiquated. Unfortunately our educational systems are only very slowly catching up. This paradigm shift begun in the mid 1990's to Developmental Emotional Neuroscience, Interpersonal Neurobiology and Polyvagal Theory. Is a child's interoceptively sense of self and interactions with other being neuroceptively (mind-brain-body) as safe or is his/her physiological state regulation/autonomic sympathetic nervous system adaptively mobilized for defensive fight/flight behavior or worse parasympathetic withdrawal/shutdown or dissociation? The question is how do we emotionally and empathically begin to understand from the perspective of the child? How do we deepen affect (emotional) reciprocal attachment and attunement around our child's functional developmental emotional-sensory processing differences? How do we as parents, teachers and simply humans begin to cultivate the conditions of physiological or autonomic state regulation of safety from our child's adaptive sympathetic nervous system of hyperarousal and defense/shutdown? We do so NOT by this manipulative, assaultive, condescending, bribery bs but rather by intersubjectively beginning to understand that all behaviors are the external or symbolic manifestation of what is occurring beneath the surface and begin to slow down (not regard our children as manipulative and positively reinforcing them like gerbils) and respectfully and engage with and around their feelings with them, from their perspective (i.e., n contrast to a factor assembly line of managed, shaped, direct surface environmental contingencies/behavior) . Thus, developing the biopsychosocial foundations of meaningful affect (emotional) co-regulation, empathy and compassion.
Hi, neils. Still upset that your floor play time isn't considered evidence-based practice?
Benim torunum Ada bu tesis konuldu Türkiye'de yokmuş bu hastalikdan
Schaff sndromunasil bir hastalik tir
Can it be given together with an AP?
my focus has not improved but i can say the impulsivity has been more manageable with this medication. i’ve been able to handle conflict better & take a step back & think before i speak so i can see how communication has improved but the only thing i disagree with is focus improvement. weight gain has been documented as well with 5% of users.
Did you gain weight?
🥺🏵 Kiddo newly diagnosed. Relief yet overwhelm
How about a test group smoking and eating the raw plant ?
"Whole exome sequencing costs range from $400 to $1,500, plus extra charges for analyzing the results. "He said 10 000. What is the actual price in 2021 ?
Only 1 comment? Wow. I've never heard of this syndrome so I can see why. You'd have to know it to search it. Informative. God bless everyone.
Ash ... I first learned of Prader Willi syndrome years ago in an episode of the TV show Law & Order . They will do anything to get after food ; it's really a shame .
I want .....but don't found it ..... please location
Wow, thank you.
I WANT
My son was just recently diagnosed after 13 years with schaff yang syndrome. I wish i knew more about it.
Got to 4:16 and had to stop. If your nutritionist tell you that CHEESE, EGGS, DAIRY and MEAT are healthy for you, run... Nutrition is NOT complicated, FAD diets are. Eat a whole foods plant-based diet and your body will thank you.
Egss and meat are two of the healthiest things you can put into your body.
Nothing happening so far , rather than interview
Very informative
As an adult, I take 3mg of Guanfacine. It's been over a month since I've started, it gives me a groggy feeling most mornings after I wake. My temper since I started has been rapidly getting worse, I hate how I've been over reacting over tiny things. My dr says this is normal because people with adhd typically withhold their feelings and blah blah. But I hate this piece of crap feeling I get, i apologize once I've finally cooled off because i know i have over reacted. I realize it while its happening but I'm so pissed in the moment I could give af about anything but remaining pissed. I just cant help it and I've been trying to cope.. I almost want to stop taking it entirely but I have noticed it helping slightly with my spiratic thinking and anxiety. But idk if this is the trade off I want. Definitely getting harder to control my aggressive impulses.
Have you tried Buspirone 15mg + melatonine 3mg instead?
@@Burevestnik9M730 I have not. I'll definitely ask about it next appointment but I think I'm fine. Those symptoms have subsided quite a bit after a month or so.
@@thatfunnyguybrandon8765 Would you say it makes the person more communicative than before?
@@thatfunnyguybrandon8765 have you been stable since then? I think maybe the reaction you reported could have been an indicator of a hidden "bipolarity" of sorts.
@@marc2377 really? That's a bit comforting to know at least because there has been multiple times where I act out then crazy regret and a whole 180 emotionally. I've been off the meds for a lil while due to stomach issues but the thought of being slightly bipolar has crossed my mind
Thank u mam, for your knowledgeable contribution
try harder we can do thi
Guanfacine works. My autistic son, 26 year-old, has improved.
How long did it take?
You can get diazoxide in the form of pills called Eudemine and proglycem if you don’t want the liquid
wow the last 10 sec was really interesting to me.. I don't think I have autism but I was hoping it helps me verbally..
Did it help?
This sounds great!
Can we increase height after 21 yrs old at least 3inch
Yea I think but only if ur growth plate located in ur hand is still opened if is closed u can not
Hi..
I highly suggest reviewing Dr.Berg’s youtube videos about the Keto Diet and insulin resistance.
Hi Nancy there's research linking the keto diet with muscle loss and higher levels of inflammation. While it appears to show weight loss in the short term a lot of it is coming from lean muscle mass. As I mentioned in my comment above I highly recommend everyone checking out Dr Greger's work. There are a series of videos on NutritionFacts.org which link to the mentioned studies and provide clear explanations.
When will this therapy be started for patients 🤣🤣 Only interview only interview only interview only interview