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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/
22q & TANGO2 - Donna McDonald-McGinn
Donna is the Director of the 22q Center & Chief of the Genetic Counseling Section at Children's Hospital of Philadelphia, also serving as Professor at the University of Pennsylvania. As Chair of the 22q11.2 Society and a Founding Board member of the International 22q11.2 Foundation, she leads global initiatives, focusing on chromosome 22q11.2 copy number variants. With over 350 publications, including a textbook, she specializes in understanding outcomes in patients with chromosome 22q11.2 deletions and variants, particularly TANGO2 Deficiency Disorder. Donna currently serves as a member of the T2RF's Scientific Advisory Board.
This talk, from our 2024 Family conference in Orlando, examine...
This talk, from our 2024 Family conference in Orlando, examine...
Просмотров: 139
Видео
Meet our Holiday Ambassador Family, the Cohens!
Просмотров 76Месяц назад
Meet Our Holiday Ambassador Family, Dave and Sandi Cohen and their daughter, Bec, a TANGO2 Warrior. Bec and her family have seen so much improvement since increasing B vitamin dosage, and have found comfort in the support of the TANGO2 community. Individuals like Bec are counting on us to find treatments and a cure. Every dollar donated has a huge impact on individuals and families, like the Co...
"Can We Fix It?" by Kasha Morris
Просмотров 1013 месяца назад
This is a story about fixing an impossible problem in an unexpected way. Kasha Morris is a retired teacher that co-founded the TANGO2 Research Foundation with her husband Mike in 2018 after a fifteen-year diagnostic journey for their son Ryan. Faced with the reality of a life-limiting ultra rare genetic condition they got to work to help their son. Although TANGO2 was newly discovered, their se...
Panel Presentation - Building Blocks for a Cure: Clinical Trial Readiness in TDD
Просмотров 1154 месяца назад
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 Disord...
Natural History Study Update & Next Steps, Christina Miyake, MD, MS
Просмотров 1194 месяца 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 714 месяца 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 544 месяца 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 424 месяца 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 354 месяца 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 164 месяца 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 1,6 тыс.4 месяца назад
B-Vitamins and Beyond with Nourhan Suleiman, RDN, LD
TANGO2 functions in the pathway of Acyl-CoA metabolism with Agustin Lujan, MD, PhD
Просмотров 1974 месяца назад
TANGO2 functions in the pathway of Acyl-CoA metabolism with Agustin Lujan, MD, PhD
Towards an understanding of the function of TANGO2 with Michael Sacher, PhD
Просмотров 3724 месяца назад
Towards an understanding of the function of TANGO2 with Michael Sacher, PhD
PCOR/CER & its Importance in the Rare Disease Community with Courtney Clyatt, MPH
Просмотров 784 месяца назад
PCOR/CER & its Importance in the Rare Disease Community with Courtney Clyatt, MPH
Zebrafish Models of TANGO2 deficiency for preclinical studies of TANGO2 Deficiency Disorder
Просмотров 334 месяца назад
Zebrafish Models of TANGO2 deficiency for preclinical studies of TANGO2 Deficiency Disorder
Investigating TANGO2-Deficiency Disorder Phenotype and Mechanism in a C. elegans Model
Просмотров 2744 месяца назад
Investigating TANGO2-Deficiency Disorder Phenotype and Mechanism in a C. elegans Model
Keynote: From Athlete, to Patient, to Advocate with Rob Long, MS
Просмотров 95 месяцев назад
Keynote: From Athlete, to Patient, to Advocate with Rob Long, MS
A doctor's discovery ignites a child's legacy
Просмотров 436 месяцев назад
A doctor's discovery ignites a child's legacy
Beyond the diagnosis: a doctor's heartfelt recollection of heartbreak to hope
Просмотров 846 месяцев назад
Beyond the diagnosis: a doctor's heartfelt recollection of heartbreak to hope
2024 Shine a Light on TANGO2 Celebration Participant Recap
Просмотров 666 месяцев назад
2024 Shine a Light on TANGO2 Celebration Participant Recap
Uncharted youth: caregiving in the teen years
Просмотров 406 месяцев назад
Uncharted youth: caregiving in the teen years
Nurturing Gratitude: A Journaling Guide for TANGO2 Caregivers
Просмотров 246 месяцев назад
Nurturing Gratitude: A Journaling Guide for TANGO2 Caregivers
Between hope and fear: facing a potential diagnosis with a new pregnancy
Просмотров 496 месяцев назад
Between hope and fear: facing a potential diagnosis with a new pregnancy
Rare Care: Reducing Distress & Embracing Well-being
Просмотров 246 месяцев назад
Rare Care: Reducing Distress & Embracing Well-being
Patient Journey Stories [Part Five]: Metabolic Crisis & Impact
Просмотров 548 месяцев назад
Patient Journey Stories [Part Five]: Metabolic Crisis & Impact
Patient Journey Stories [Part Six]: Sibling Symptom Variability
Просмотров 568 месяцев назад
Patient Journey Stories [Part Six]: Sibling Symptom Variability
Patient Journey Stories [Part Four]: Early Diagnosis
Просмотров 278 месяцев назад
Patient Journey Stories [Part Four]: Early Diagnosis
Patient Journey Stories [Part Three]: 22q & TANGO2
Просмотров 498 месяцев назад
Patient Journey Stories [Part Three]: 22q & TANGO2
God lord I pray over this child in your name amen 🙏
😢
It looks just like the scene when the animal is slaughtered.May be she killed animals in past life.Or the cause is meat eating.
I felt that sigh
What is that over her head
Sound starts at 0:30
Sound starts at 0:50
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.
@@michellenainkristinabusch1221Agreed
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?
I'm sure it's ok. I doubt it's big enough to go down the childs throat or else they would not be given to babies in the first place. But even so, dad is watching over him and he is in a building filled with medical professionals that can aid in any way. At this point the little bit of comfort and soothing he can have is probably worth it.
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 ❤
B1 deficiency severe. I had it.
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 🔥🔥🔥