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FOXG1 Research Foundation
United States
เข้าร่วมเมื่อ 14 มิ.ย. 2018
The FOXG1 Research Foundation is the global organization driving the science to find a cure for FOXG1 syndrome. You will find a wealth of information about the innovative science and strategy along the Path to a Cure for FOXG1 syndrome. Don't miss the new episodes of "Inside FOXG1 Research" and "What's Up with FOXG1 Research."
Resources for FOXG1 Fundraising Events. Let Us Help You Fundraise to Cure FOXG1 syndrome!
Introducing FOXG1 Fundraising Event Navigators - a program that helps make fundraising easy and fun for anyone who wants to host a FOXG1 Research Foundation Fundraising event. Watch this video to hear about all of our fundraising ideas and resources and learn how you can sign up for a FOXG1 Event Navigator -or become one -and help create successful fundraising events across the world! We are on a mission to cure FOXG1 syndrome, but we need support! This work will not only help children with FOXG1 syndrome live the healthier lives they deserve, but will also help accelerate treatments for rare diseases at large!
Help cure FOXG1 syndrome: foxg1research.org/donate
Help cure FOXG1 syndrome: foxg1research.org/donate
มุมมอง: 28
วีดีโอ
Tom Horton Visits the FOXG1 Research Center Lab - University at Buffalo
มุมมอง 1682 หลายเดือนก่อน
Tom Horton, Former CEO of American Airlines and grandfather to Gianna who has a rare genetic neurological condition called FOXG1 Syndrome, visits the FOXG1 Research Center at the University at Buffalo with his wife Janet Horton. Tom shares that the lab is on the cutting edge of science and is working on a gene therapy for FOXG1 syndrome. Tom Horton joined the FOXG1 Research Foundation team to h...
FOXG1 Research Foundation Webinar: Tanganil Info Session with SynGAP Research Fund
มุมมอง 2814 หลายเดือนก่อน
On July 15, 2024 The FOXG1 Research Foundation (FRF) hosted an informational webinar session on the reported findings of patients using the nutraceutical called Tanganil. This webinar was led by the SynGap Research Fund team in an effort to help Neurodevelopmental Disorder patient groups track and monitor their experiences with Tanganil. Note: this webinar is only for informational purposes and...
Parents Driving Cures: Meet The FOXG1 Research Foundation
มุมมอง 1465 หลายเดือนก่อน
Since 2017 the parent-led FOXG1 Research Foundation has innovated every step of the rare disease drug development process and has become known as leaders in the rare disease space. The Foundation is dedicated to finding treatments for every child in the world with FOXG1 syndrome while also focusing on patient advocacy and family support. This is a story of urgency, innovation, and most of all -...
FOXG1 Research Foundation - Science Q&A June 2024
มุมมอง 4325 หลายเดือนก่อน
Watch the recorded Zoom session hosted by the FOXG1 Research Foundation, where we delve into our progress towards launching the first AAV9 gene therapy into human clinical trials for FOXG1 syndrome. This Q&A features in-depth discussions with Dr. Gai Ayalon, Chief Drug Development Officer, Elli Brimble, Director of Clinical Research, Nasha Fitter, CEO of the Foundation, and our co-founder and E...
Takeaways from The ASGCT Conference 2024 from the FOXG1 Research Foundation CEO, Nasha Fitter
มุมมอง 1336 หลายเดือนก่อน
The FOXG1 Research Foundation team attended the 2024 American Society of Gene and Cell Therapy Conference in Baltimore, Maryland. CEO, Nasha Fitter shares her take-aways about this exciting time in translational science as the FOXG1 Research Foundation is working to bring a promising gene therapy for patients with FOXG1 syndrome through clinical trials. Help support this work for FOXG1 syndrome...
Chan Zuckerberg Initiative: How the FOXG1 Research Foundation is critical to driving treatments
มุมมอง 958 หลายเดือนก่อน
Tania Simoncelli, Vice President, Science and Society, Chan Zuckerberg Initiative speaks about the FOXG1 Research Foundation extrraodinary work towards treatments and how it inspired the "Rare As One" program. “In 2019 the Chan Zuckerberg Initiative launched the Rare as One network, it’s a program where we are providing direct funding and a whole incubator style program to help patient-led rare...
FOXG1 Research Foundation Speaks at the White House Rare Disease Forum
มุมมอง 4398 หลายเดือนก่อน
FOXG1 Research Foundation Co-founder and CEO Nasha Fitter was the first spotlight speaker at the White House Rare Disease Forum hosted by the White House Office of Science and Technology Policy's Health Outcomes Team February 28th ahead of Rare Disease Day 2024. Nasha Fitter represented the FOXG1 syndrome community as well as the 30 million patients, 15 million children, in the United States li...
Announcing the University at Buffalo FOXG1 Research Center, led by FOXG1 Biologist/Parents
มุมมอง 1.1K10 หลายเดือนก่อน
University at Buffalo announces the launch of the FOXG1 Research Center to study FOXG1 syndrome’s impact on brain development and translate research to treatments for FOXG1 syndrome. The FOXG1 Research Center will be led by leading experts Soo-Kyung and Jae Lee, whose own daughter has FOXG1 syndrome. “This center will make UB the home of the world’s premier research center devoted to the studie...
Navigating Hospitalizations: FOXG1 Parents Support Webinar
มุมมอง 9911 หลายเดือนก่อน
Hospitalizations are something that most of our FOXG1 and rare disease community encounter far too often. Parents have become experts in navigating these experiences to ensure both their child's and their own needs are met. On November 13, 2023 we hosted the FOXG1 Parents Support Webinar on Navigating Hospitalizations featuring three FOXG1 moms who bring both personal and professional expertise...
How to Create Your FOXG1 Race to a Cure Fundraising Team
มุมมอง 101ปีที่แล้ว
FOXG1 mom to Eliza, Rachel takes us thorough step-by-step instructions to start your own FOXG1 Fundraising team. It's just like a GoFundMe, but through Kindful. It's your personal fundraising page that you can share with your network of supporters. You can add your story, photos and video. Set your goal and join the race to help everyone int he world with FOXG1 syndrome live a healthier easier ...
FOXG1 Research Foundation: Six Years of Progress
มุมมอง 155ปีที่แล้ว
The FOXG1 Research Foundation (FRF) celebrates six years of incredible progress along the race to a cure. Watch this message from Nasha Fitter, the co-founder and CEO and a rare disease thought-leader and trailblazer. Nasha details the foundation's progress in the three critical areas for success: Clinical, Science, and Community. The FRF is moving along the roadmap to clinical trials and has i...
FOXG1 2023 Race to $200K!
มุมมอง 229ปีที่แล้ว
Fellow FOXG1 parents, we are racing towards clinical trials for therapeutics to help all our kids! Together, we can reach our $200K end-of-year goal! Just go to www.Foxg1research.org and click on Race to a Cure and then click start a team! If every FOXG1 family raises $500, we will fly past this goal! Please reach out for help on starting your Team and ways to maximize your fundraising efforts!...
Joyfully Josie Laughing
มุมมอง 182ปีที่แล้ว
From the time she was a baby, Josie has the greatest laughter! You can't help but laugh along! This is one of our favorite laughing videos! Learn more: www.joyfullyjosie.love Help cure FOXG1 syndrome: foxg1research.org/donate
FOXG1 Parents Support Webinar: "Tell Us Abey" Communications System
มุมมอง 719ปีที่แล้ว
The FOXG1 Parents Support Team introduces Josh Weitzman, co-creator of the "Tell Us Abey" communications system that he and his wife Michelle developed for their son Abraham "Abey," who has FOXG1 syndrome. Witnessing Abey's ability to communicate with this tool has given the FOXG1 community a new outlook on our children's cognitive abilities. Abey is a student at Columbia University and a skill...
Josie Should Listen to T-Swift. A FOXG1 Boy and his Communications device (part 3)
มุมมอง 793ปีที่แล้ว
Josie Should Listen to T-Swift. A FOXG1 Boy and his Communications device (part 3)
Josie Reads: A FOXG1 boy and his Communications device (part 2)
มุมมอง 929ปีที่แล้ว
Josie Reads: A FOXG1 boy and his Communications device (part 2)
A FOXG1 Boy and his Communication Device - Abey Meets Josie part 1
มุมมอง 1.5Kปีที่แล้ว
A FOXG1 Boy and his Communication Device - Abey Meets Josie part 1
Goose FOXG1 Benefit | 3-11-23 | The Capitol Theater
มุมมอง 776ปีที่แล้ว
Goose FOXG1 Benefit | 3-11-23 | The Capitol Theater
Highlights from the 2022 FOXG1 Syndrome Parents Conference!
มุมมอง 452ปีที่แล้ว
Highlights from the 2022 FOXG1 Syndrome Parents Conference!
FOXG1 Syndrome Clinical Findings w/ Elli Brimble - The FOXG1 Conference 2022
มุมมอง 449ปีที่แล้ว
FOXG1 Syndrome Clinical Findings w/ Elli Brimble - The FOXG1 Conference 2022
Neurology Session:Characteristics of FOXG1 Syndrome (Sleep and Communication) - Dr. Time Benke
มุมมอง 167ปีที่แล้ว
Neurology Session:Characteristics of FOXG1 Syndrome (Sleep and Communication) - Dr. Time Benke
Neurology Session: Panel Discussion with Q&A
มุมมอง 55Kปีที่แล้ว
Neurology Session: Panel Discussion with Q&A
Closing Comments FOXG1 Conference 2022 : Gratitude with Executive Director, Nicole Johnson
มุมมอง 363ปีที่แล้ว
Closing Comments FOXG1 Conference 2022 : Gratitude with Executive Director, Nicole Johnson
Caring for Yourself as a FOXG1 Parents: Pam Skillman - Family therapist and FOXG1 Mom
มุมมอง 342ปีที่แล้ว
Caring for Yourself as a FOXG1 Parents: Pam Skillman - Family therapist and FOXG1 Mom
FOXG1 Standard of Care Session: Dr. Christine Roman - Seeing Clearly -CVI & FOXG1
มุมมอง 285ปีที่แล้ว
FOXG1 Standard of Care Session: Dr. Christine Roman - Seeing Clearly -CVI & FOXG1
FOXG1 Standard of Care Session: Pulmonology -The In & Out of Breathing - Jessica Erkman; NYU
มุมมอง 404ปีที่แล้ว
FOXG1 Standard of Care Session: Pulmonology -The In & Out of Breathing - Jessica Erkman; NYU
FOXG1 Standard of Care Session: Digestible Tips for FOXG1 GI Issues - Vanessa Vera NP
มุมมอง 399ปีที่แล้ว
FOXG1 Standard of Care Session: Digestible Tips for FOXG1 GI Issues - Vanessa Vera NP
23:50, OMG!
Heart melting... beautiful child with a beautiful smile/laugh.. she is so blessed and blessed with LOVE❤.. brings tears to my eyes...
Oh God!! It is very comforting for me to know that there is a possibility of communication for them. I have two children with FoxG1 Syndrome. God bless these angels.🙂
I'm working with a 8 yo Boy with fox g1. He has a device with eye gaze control for less than a year now. And within 6 months he started to tell things, share informations and although telling his thoughts. Without the device you'd think he's just able to share emotions with his facial impressions and absolutely not interested in his soundings especially while fighting his favorite toy. At the moment we're trying to let him learn the alphabet and numbers the same as the other kids in our class for disabled kids. Sometimes you can notice him being lazy and not use his device as we ask him to (like not looking for long enough to let the app read out the word)but in the moment he starts grinning he reveals himself. In between his mental developments are so amazing. He is able to understand connections in behavior within the last few weeks. He left me with my mouth open a lot 😅 and I think es getting fun out of it 😊 he is really becoming a biiiig boy now 🫶🏻
Türkiye den yazıyorum. 7 yaşında kızım var. 3 yaşında bu teşhis konuldu. Süreçler çok zor. Allah yardımcımız olsun. Bilgi paylaşmak isteyen olursa buradan mesaj yazabilir. Bakımı zor çocuklar. Çocuğumuzun hayatını kolaylaştırmak için elimizden geleni yapıyoruz. Ailelerimize sabır dilerim.
My 2 year old just had his eeg today all the symptoms are lining up with this. Seizures started last month. 100% infantile spasms. Neurology appointment isn’t till next year. How can we get faster results ? Thank you in advance.
The camera man is shaking. I would too and zoom in now and then. I would tell her thank you for showing me what I wanted.
Wow, Miss Lady I love your short dress
23:51 Red shoes match red lingerie
I likento shinenshoes of red shoe guol
Thanks alot for the update through Q&A and well articulating the current progress.
This is a great Q&A. Thank you for providing some clarity on these topics.
What would a gene therapy potentially mean for an older child or teenager with foxg1 that is well past the early stages of brain development?
Great insights. I appreciate the explanation. 🙏🏼
It’s great to hear this type of research is underway. I look forward to hearing more about the progress and outcomes of this work in the Fink Lab at UCD.
Well said Nasha, thanks for sharing these observations. We agree!
❤❤❤❤
I loved it when Abey quoted Donald Rumsfeld - "I went to school with the brain I have".
hi corbin!!!!
I got diagnosis for my son today, how do I get in touch with you ?
please see the website at www.foxg1research.org and connect with us!
Amazing job. This is an unprecedented, unbelievable story. I hope my fox will write anything one day to me. God bless you.
What a wonderful message by inspiring people! Thank you for sharing your experiences and children with us.
Nice shoe
Was für ein demotivierendes Videos
Dr.your a very beautiful woman and I wanted to say hi
Hi beautiful how are youy name is Pete Carbullido I seen you on you tube and want to talk to you
Who is the one in the white pants
Hey buetiful how are you
She pretty good looking
I like to see her in person
Dr. Nadia Bahi Buisson 🥂
2:42
Thank you man ❤
Much appreciated
@@alfonsolorenteguerrero1444🙏
A truly memorable experience that we will never forget ❤️ #CureFoxG1
"promosm"
23:51
Nothing happened
❤
Thank you man ❤
Red lingerie matches her shoes
Amazing! It's just so inspiring what a community of passionate people can achieve.
❤️🙏🏼🤲🏼🛐
❤
I have a grandchild with Fox G1 Syndrome. I pray one day there will be a cure.
Hi Nasha, Could you share more details about the clinical trials. How can parents share interest to have their children enrolled? Thank you
Please reach out to the FOXG1 Research Foundation Australia for all FOXG1-related matters in Australia. steve.hille@foxg1research.org All parents worldwide will be sent an email with all the details regarding the trial.
Nasha, so clear, so good AND hopeful. CONGRATULATIONS to you and all the FOXG1 Research Foundation team!!
Congratulations to the FOXG1 Research Foundation team on your tremendous progress!! Happy 5th Birthday!!!
Well done Nasha. The Rett syndrome community is cheering for you!
Thank you so much ❤️🙏🏼🛐💎
Há avanços nessa pesquisa? Fiquei bastante animado!!!
I would be very interested to see what impacts whole plant cbd oils would have on cells
Thank you for the update!
Thank you for sharing Josie. 🥰
♥️
Is a red pimple also a sign of any thing? My kid have one on his hand and one on his thigh. Pls reply!