The Frazier study is super easy!

Thanks for all your hard work.Things will get better and better.

this needs to be recongised more, cuz this is super serious.

Mike, this explanation was excellent, super clear and incredibly encouraging, will keep forging ahead with fundraising. John Hill

❤❤❤❤❤❤❤❤❤❤❤❤

Thank you Mike for this comprehensive explanation. We will do our best to help

is that ufd techs son

Nancy K IS A ROCK STAR!!!

Thank you Mike!

❤❤❤ i was watching you at praxis conference and i am so proud of you Mike! I could tell there was something up because you looked tired, I am so sorry you are sick but double grateful you show up over and over again even thru personal illness ❤❤❤

Exactly this!!

God bless you

Heather Duvall had seizures poss in hospital nursery and at 7 days old

Yes yes yes Heather in group home…already mis medicated…..I can’t wait years I’m really sick w cardio problems had an urgent care dr admit to me tonight he doesn’t understand why my cardio giving me meds to lower my blood pressure and also to raise my blood pressure…………he gets gold star. Never had any dr admit he didn’t know anything EVER too bad he’s not Heathers Dr….Mike put some money aside for group home it’s a desperate situation almost guarantee Heather will get hurt. As per NJ STATE STATISTICAL REPORTS

Preach Mike!! 🙌 We always need to bring our worst days to clinicians. I am quick to tell friends it’s not so bad while entirely forgetting our then 3 year old busted my husband’s windshield with his forehead when he refused to get out of the car and threw an absolute fit.

❤❤❤ thanks Mike

@Mike any thing in Arkansas for my grandson with Syngap 1

Mi nieto tiene el síndrome Syngatp1 hoy fue diagnosticado necesitamos mucha información.

So glad school is better for Tony and your family!! Last year was beyond crazy.

Thank you for your podcast. I’m so excited to have found you!!!!!! You’re a hero!!!!

Can’t wait for the conference!

❤❤❤

I am not crying with Lauren, you are crying! :) ❤ SRF thank you for this

Please leave comments and question here!

I’ve been trying for 3 years to get heathers seizures on video…..got Wyze cameras….dont know how to set up

Great mike😊

His dead is in court right now 😢

İngilizce bilmediğim için seni anlamıyorum 😊

SRF is ❤‍🔥! Well done. So much happening! Exciting work.

Great explanations of three types of cutting-edge work!

Thansk MIke! Keep up the good work and God bless you and your family...

Womp Womp

@mike Have the company and investors come visit my home if they're in San Diego to see why we need a treatment, even if they have to inject into the spine.

What what what!!! ??? Colorado ? Thrilled

Fantastic organization!!! Great job guys!

why is no one talking about the washing machine in the background

Fantastic webinar!!

State of Nj she is Too handicapped….no group home or institutation in state…..she is38…..I have been trying since 2012…..I am 74 and really sick…..Nj is scared of bad publicity…..maybee you could help with reporter to run story?

Surf really needs a Lawyer pro bono to help us fight for legal and medical rights and against discrimination…which is rampant

Heatherduvall had new eye seizures at st BARNABUS hosp in Nj 2 yrs ago….she is 38

Heather Duvall age 38 NEW JERSEY in hospital right now NEED dr/spec to talk to each other I begged a hospitalist for this he said no

Congratulations to the state ambassadors. My heart is with you all. 😊

It’s all good, the FTC is very aware of these false claims and irresponsible marketing claims being made. Remember the golden rule if it sounds too good to be true it probably is. This is all bullshit.

How are you even touting this paper when the data has been collected improperly? I guess we need to go ahead and submit evidence that the data collected for this particular paper was not done with informed consent for certain participants?

Are you drunk? 😮

REACH! Dude! Try to kill the first organization before you EVER came around? Seriously? Where's the answer to my questions about the research and your son's mutation? Scared are ya? I will make sure the community knows who you REALLY are!

It's so irresponsible to even advise our families to do this! What data? What are you doing with the data you are collecting? Are you promising things you can't deliver on? Come on, Mike! You are a deceptive POS!

🚨 CALL TO ACTION! 🚨 It's deeply concerning to learn that SYNGAP Research Fund leadership in 2020 exploited a child’s genetic information for malicious purposes, prompting the Federal Trade Commission agency to reconsider and change a rule (law) regarding the Health Breach Privacy Notifications 🕵‍♂. If you’re not raising your eyebrows by now, you have no idea how serious this deplorable act was, then you don’t understand the seriousness of a government agency taking action based on open comments and a complaint by the mother (since deceased). It’s time you need to wipe sleep from your eyes. This egregious act not only raises serious ethical questions but also highlights the need for accountability and transparency. The family affected by the hurt these people caused deserve justice and protection. It's heartbreaking that some leaders are turning a blind eye to such egregious actions 😔. Volunteers who choose to ignore this reality need to reassess their priorities. Their leadership needs to remove those left on the board, including the managing director and other directors involved at the time this deplorable and egregious act took place. Demand accountability from those in power. #EthicsMatter #ProtectChildren 🙏✊

We get to ❤

Stoke Therapeutics, a biotechnology company, has innovated a new approach to monogenic diseases like these that restores normal protein functions through remediating alternative splicing mistakes. The TANGO approach restores productive mRNA transcripts that code for the SYNGAP1 protein and significantly reduces symptoms. Modern medicine, especially in the field of epigenetics, is becoming closer and closer to curing individuals affected by these mutations. They are in clinical trials now, and utilize ASOs that have already been approved by the FDA. So, there is hope that within Jaxon's lifetime, as well as all the current symptomatic individuals with alternative splicing mistakes / nonproductive mRNAs, there could be an accessible cure.