- Видео 101
- Просмотров 346 488
TANGO2 Research Foundation
Добавлен 26 фев 2018
Our mission is to lead the way in finding a cure for TANGO2 deficiency disorder.
For more information, go to: www.tango2research.org
Find us on: Facebook: tango2research/
X/Twitter: TANGO2Research
Instagram: tango2research
LinkedIn: www.linkedin.com/company/tango2-research-foundation/
For more information, go to: www.tango2research.org
Find us on: Facebook: tango2research/
X/Twitter: TANGO2Research
Instagram: tango2research
LinkedIn: www.linkedin.com/company/tango2-research-foundation/
Panel Presentation - Building Blocks for a Cure: Clinical Trial Readiness in TDD
Panel Presentation - Building Blocks for a Cure: Clinical Trial Readiness in TANGO2 Deficiency Disorder, Christina Miyake, MD, MS, Charlotte Engebrecht, BS, Madeline Chadehumbe, MD
Dr. Christina Miyake is a pediatric cardiologist/electrophysiologist and the Director of the Cardiovascular Genetics Arrhythmia Program. She has been helping lead the Natural History Study of TANGO2 Deficiency Disorder. Her work focuses on better understanding this disease from all aspects - clinical, bench research, family and patient perspective with an ultimate goal to find answers that can help manage, treat, improve outcomes and someday find a cure. Dr. Miyake currently serves as a member of the T2RF's Scie...
Dr. Christina Miyake is a pediatric cardiologist/electrophysiologist and the Director of the Cardiovascular Genetics Arrhythmia Program. She has been helping lead the Natural History Study of TANGO2 Deficiency Disorder. Her work focuses on better understanding this disease from all aspects - clinical, bench research, family and patient perspective with an ultimate goal to find answers that can help manage, treat, improve outcomes and someday find a cure. Dr. Miyake currently serves as a member of the T2RF's Scie...
Просмотров: 65
Видео
Natural History Study Update & Next Steps, Christina Miyake, MD, MS
Просмотров 7114 дней назад
Natural History Study Update & Next Steps, Christina Miyake, MD, MS Dr. Christina Miyake is a pediatric cardiologist/electrophysiologist and the Director of the Cardiovascular Genetics Arrhythmia Program. She has been helping lead the Natural History Study of TANGO2 Deficiency Disorder. Her work focuses on better understanding this disease from all aspects - clinical, bench research, family and...
TANGO2 Talk, featuring Leah Engbrecht, a Behavior Coach
Просмотров 5321 день назад
TANGO2 Talk from August 10, 2024, featuring Leah Engbrecht, a Behavior Coach from the Del Mar Union School District. Behavior management is a crucial topic for parents of children at every age, and Leah will provide valuable tips and insights. SUBSCRIBE to the TANGO2 Research Foundation RUclips channel for more videos. About the TANGO2 Research Foundation: Our mission is to lead the way in find...
Panel Presentation - Heart to Heart: Understanding Cardiac Challenges in TANGO2 Deficiency Disorder
Просмотров 46Месяц назад
Panel Presentation - Heart to Heart: Understanding Cardiac Challenges in TANGO2 Deficiency Disorder with Joshua Meisner, MD, PhD, Cheyenne Beach, MD, Giorgio Pochettino Dr. Meisner is a pediatric cardiologist and early stage physician scientist at the University of Michigan with a clinical focus in cardiovascular genetics. He has a translational laboratory studying rare disease causes of pediat...
Panel Presentation - Navigating Movement Disorders associated with TDD
Просмотров 42Месяц назад
Panel Presentation - Navigating Movement Disorders associated with TDD: The Vital Role of a Movement Specialist & Families in Diagnosis & Treatment with Samuel Mackenzie, MD, PhD, Emily Uduezue, OTD, OTR/L, Kara Cameron Dr. Mackenzie is a physician scientist at the University of Rochester Medical Center where he treats patients with genetic neuromuscular diseases and oversees a lab comprised of...
Panel Presentation - Empowering the TANGO2 Community: Strength in Support
Просмотров 34Месяц назад
Empowering the TANGO2 Community: Strength in Support with Amanda Hull, PhD, Vanni Le, MS, & Ronda Thorington, LPC Amanda Hull is from Suffolk in England. She and husband, Daniel, have three boys; Joe, Sebby and Walter. Sebby is a 13-year-old diagnosed with TANGO2 Deficiency Disorder. Amanda has worked as an Educational Psychologist for the past 18 years, and Daniel is a farmer. They live on a f...
2024 Shine a Light on TANGO2 Celebration at TANGO2 Family Conference
Просмотров 12Месяц назад
2024 Shine a Light on TANGO2 Celebration at TANGO2 Family Conference featuring our 2024 Ambassador Family, the Driffill Family, Cycle 4 awardees, TANGO2 Emerging Researcher Awardees, TANGO2 Champion Awardee and more! SUBSCRIBE to the TANGO2 Research Foundation RUclips channel for more videos. About the TANGO2 Research Foundation: Our mission is to lead the way in finding a cure for TANGO2 relat...
B-Vitamins and Beyond with Nourhan Suleiman, RDN, LD
Просмотров 1,4 тыс.Месяц назад
B-Vitamins and Beyond with Nourhan Suleiman, RDN, LD Nourhan Suleiman is a Registered Dietitian Nutritionist graduated Summa Cum Laude with a Bachelor of Science degree in Human Nutrition and Foods from University of Houston. Nourhan completed a comprehensive Dietetic Internship of supervised practice in various settings including a level I trauma facility, Texas Children’s Hospital, and nutrit...
TANGO2 functions in the pathway of Acyl-CoA metabolism with Agustin Lujan, MD, PhD
Просмотров 145Месяц назад
TANGO2 functions in the pathway of Acyl-CoA metabolism with Agustin Lujan, MD, PhD Agustin Lujan is a passionate scientist in the fields of medicine, technology, and education. He obtained his MD from UNCuyo in Argentina and pursued a PhD at CONICET under the guidance of Professor Rabinovich and Professor Damiani. Afterward, he moved to Spain, where he did his postdoctoral research at Professor...
Towards an understanding of the function of TANGO2 with Michael Sacher, PhD
Просмотров 294Месяц назад
Towards an understanding of the function of TANGO2 with Michael Sacher, PhD Michael Sacher received his PhD in biochemistry from McGill University followed by postdoctoral work in the Department of Cell Biology at Yale University. His work led to the discovery of the TRAPP complexes that are critical for moving proteins between specific cellular compartments. More recently, his laboratory becam...
PCOR/CER & its Importance in the Rare Disease Community with Courtney Clyatt, MPH
Просмотров 72Месяц назад
PCOR/CER & its Importance in the Rare Disease Community with Courtney Clyatt, MPH Courtney Clyatt is a Senior Program Officer for Engagement at the Patient-Centered Outcomes Research Institute (PCORI). She came to PCORI with more than 10 years of experience in public health and project management. In her position, she has played a vital role in the Engagement Awards program and, specifically, t...
Zebrafish Models of TANGO2 deficiency for preclinical studies of TANGO2 Deficiency Disorder
Просмотров 29Месяц назад
Zebrafish Models of TANGO2 deficiency for preclinical studies of TDD with Vandana Gupta, PhD Dr. Vandana Gupta’s laboratory at Brigham and Women’s Hospital in Boston Massachusetts studies the genetics of neuromuscular diseases. Her research group has identified several new genes in neuromuscular diseases and developed animal models to test novel therapeutics and study disease pathophysiology. S...
Investigating TANGO2-Deficiency Disorder Phenotype and Mechanism in a C. elegans Model
Просмотров 59Месяц назад
Investigating TANGO2-Deficiency Disorder Phenotype and Mechanism in a C. elegans Model with Sarah Sandkuhler, MS Sarah Sandkuhler is an MD/PhD student in the Pathology department at the University of Rochester School of Medicine and Dentistry. She is working on her thesis in the lab of Samuel Mackenzie, studying TANGO2 Deficiency Disorder in a C. elegans (worm) model. Her clinical interests inc...
TANGO2 Basics with Seema Lalani, MD
Просмотров 60Месяц назад
TANGO2 Basics with Seema Lalani, MD Dr. Lalani is a Professor and a clinical geneticist at Baylor College of Medicine and actively sees patients at Texas Children’s Hospital in Houston. As a board member of the patient advocacy group, TANGO2 Research foundation, she assists families in advancing their research and education mission. With a focus on patient care, advocacy, outreach, service, edu...
Keynote: From Athlete, to Patient, to Advocate with Rob Long, MS
Просмотров 5Месяц назад
Keynote: From Athlete, to Patient, to Advocate [Rob Long, MS] at the 2024 TANGO2 Family Conference. In 2010, Rob Long was on the cusp of an NFL career as a star college punter at Syracuse. However, life had other plans. Five days after his final college game, Rob was diagnosed with a rare and aggressive brain tumor with an average life expectancy of just three years. Emergency surgery and treat...
A doctor's discovery ignites a child's legacy
Просмотров 412 месяца назад
A doctor's discovery ignites a child's legacy
Beyond the diagnosis: a doctor's heartfelt recollection of heartbreak to hope
Просмотров 782 месяца назад
Beyond the diagnosis: a doctor's heartfelt recollection of heartbreak to hope
2024 Shine a Light on TANGO2 Celebration Participant Recap
Просмотров 632 месяца назад
2024 Shine a Light on TANGO2 Celebration Participant Recap
Uncharted youth: caregiving in the teen years
Просмотров 392 месяца назад
Uncharted youth: caregiving in the teen years
Nurturing Gratitude: A Journaling Guide for TANGO2 Caregivers
Просмотров 242 месяца назад
Nurturing Gratitude: A Journaling Guide for TANGO2 Caregivers
Between hope and fear: facing a potential diagnosis with a new pregnancy
Просмотров 452 месяца назад
Between hope and fear: facing a potential diagnosis with a new pregnancy
Rare Care: Reducing Distress & Embracing Well-being
Просмотров 242 месяца назад
Rare Care: Reducing Distress & Embracing Well-being
Patient Journey Stories [Part Five]: Metabolic Crisis & Impact
Просмотров 474 месяца назад
Patient Journey Stories [Part Five]: Metabolic Crisis & Impact
Patient Journey Stories [Part Six]: Sibling Symptom Variability
Просмотров 564 месяца назад
Patient Journey Stories [Part Six]: Sibling Symptom Variability
Patient Journey Stories [Part Four]: Early Diagnosis
Просмотров 274 месяца назад
Patient Journey Stories [Part Four]: Early Diagnosis
Patient Journey Stories [Part Three]: 22q & TANGO2
Просмотров 444 месяца назад
Patient Journey Stories [Part Three]: 22q & TANGO2
TANGO2 Patient Journey Stories [PART TWO]: Family Impact
Просмотров 506 месяцев назад
TANGO2 Patient Journey Stories [PART TWO]: Family Impact
Young Patricia Gonzalez Edward Martin David
Smith Sarah Wilson Amy Davis Betty
Williams Scott Miller Richard Johnson Frank
I have grand mal seizures too. So sorry for your baby 😢
🫤
Please provide recommendations for treating cerebellar ataxia or "drunken gait" in India, particularly in Bangalore, with suitable for a 26-year-old. Any suggestions or advice would be appreciated.
Allah'ım kızıma ve bütün bu bebeklerimize acil şifalar ver yarabbim, çok zor zok kalbim dayanmıyor artık bunları görmeye , yarabbim sabır ver bize evlatlarımıza şafi ismiyle şifa ver🙏
Thank you for sharing.
Glad you had a chance to listen to these stories!
Thank you Ann and Dr. Mackenzie!
Our pleasure. Thank you for listening and supporting our channel and Foundation!
❤❤❤❤❤❤
ACTH > Vigabatrine
My son has intractable epilepsy. It’s so sad when they have a seizure and there’s nothing you can do but keep them safe from injury. God bless this little one and all who have epilepsy.
Why is my son there?
She got the mma helmet on
As a parent with adult son suffering suddenly from this. My heart hurts for this child. Healing prayers
Lmao
Poor baby 😢
Ghit Laggin' FR
Inshallah! She will persevere and prevail
I love you Hannah and I'm so sorry you have to go through this you're not alone
I have seizures too get well soon baby
Prayers for your family, I know how much pain this can cause, we are currently going through it, started when my daughter had covid at 5 months and shes two years now. Praying for your daughter's full recovery.
That is heartbreaking
God Bless you dear❤
I feel sooooo bad 🥺🥺🥺🥺🥺🥺
AWWWWW BLESS HIS HEART
Her
Lmfao 😂😂😂
Faking for attention. If not your bad for letting that live
You're an awful human.
Youll be ok kidder.
I was diagnosed with Epilepsy when I was 2 and had a Brain Tumor surgically removed when I was 8. 23 almost 24 years seizure free. Does she have a Tumor?
ya no salvar el bebé spasmas,
Pobrecito el bebé está salud
I feel bad so this what it look like when I was little having a seizure 😢
Poor baby ❤ God bless
Isn't it dangerous to have a soother in his mouth, What if he chokes or so?
Praying 🙏
That's actually not a seizure The parents are giving that child Sexual Pleasuring Some kind of toys
Poor baby I know how it feels my heart goes out to you. ❤
I am off seizure medicines are used to have absence seizures, and I think she would recover
Are you her Dr? Not everyone is so lucky and Epilepsy doesn't have a cure.
this happens to me once or twice a month , do you know this happens?
Thank you for showing us your little boys gait. It has helped me get help for my son ❤
Why is your hand there?
He's trying to keep her in recovery position (on her side) so that if she throws up, she won't choke
Yeah, but keeping her on her side isnt in between her crotch
Shark seizure?
Actually it's orgasmic That's what's really going on with the girl It's a cover-up
GOT SEM DANCE MOVES 🕺
Fire 🔥🔥🔥
Get your hand out of her butt
God bless you baby girl
Move your hand
No. He's keeping her on her side. It's exactly what he should be doing
That is so fake
Actually asshole, no. It's not.
bro its a baby, how tf is a baby gonna fake a seizure
@@miimiikyuu Because if you look at it carefully The baby is having orgies To cover up story
Are you okay? My son is having them seizures, the postures, sounds, movement of the lips and eyes, looks exactly the same. So if i may ask what's fake about what is shown here?
That's not fake.
My friend has seizures and I am proud of you for doing this putting a helmet and watching your kid you are certified best parents.
Isn't that clonic only?
The tonic part probably already occurred before the filming. But, this is the clonic stage.
Poor little thing 😮 feel bad for her But she'll be fine
You don't know that. Epilepsy and seizures kill a lot of people