Pitt Hopkins Research Foundation (@pitthopkins) 's Twitter Profile
Pitt Hopkins Research Foundation

@pitthopkins

Dedicated to Pitt Hopkins research & treatment, and to creating a network of friends & supporters of those with PTHS. Join us on FB @ pitthopkins.org.

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linkhttp://www.pitthopkins.org calendar_today11-02-2014 02:39:47

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Pitt Hopkins Research Foundation (@pitthopkins) 's Twitter Profile Photo

Our Pitt Hopkins ROADMAP to a CURE.. be proud of how far we’ve come, and have faith in how far we’ll go.. Continuing to fight for miracles until we find a cure! pitthopkins.org/roadmap #PittHopkins #neverstop #nevergiveup #research #hope #cure

Our Pitt Hopkins ROADMAP to a CURE.. be proud of how far we’ve come, and have faith in how far we’ll go..
Continuing to fight for miracles until we find a cure!
 pitthopkins.org/roadmap
#PittHopkins #neverstop #nevergiveup #research #hope #cure
Pitt Hopkins Research Foundation (@pitthopkins) 's Twitter Profile Photo

Pitt Hopkins Awareness Day We hope you'll consider making a donation today in honor of all of those who suffer from this debilitating disease. Your gift is so much more than money-- it is hope. We can never thank you enough for your support! pitthopkins.org/donate #pitthopkins

Pitt Hopkins Awareness Day 

We hope you'll consider making a donation today in honor of all of those who suffer from this debilitating disease. Your gift is so much more than money-- it is hope. We can never thank you enough for your support!
pitthopkins.org/donate
#pitthopkins
Pitt Hopkins Research Foundation (@pitthopkins) 's Twitter Profile Photo

Our VPs, Theresa Pauca & Jessica Fletcher, along with the @Mahzi team, visited @Resilience this past week to present about #PittHopkins & learn about the manufacturing of Pitt Hopkins gene therapy vectors! Thank you Resilience for having us! #genetherapy #hope #team

Our VPs, Theresa Pauca & Jessica Fletcher, along with the @Mahzi team, visited @Resilience this past week to present about #PittHopkins & learn about the manufacturing of Pitt Hopkins gene therapy vectors! Thank you Resilience for having us! #genetherapy #hope #team
Pitt Hopkins Research Foundation (@pitthopkins) 's Twitter Profile Photo

We know you have many giving options this Tuesday and every non-profit is vying for your attention -- and your donation. Reasons why YOUR DONATION IS SO MEANINGFUL TO the Pitt Hopkins Research Foundation…

We know you have many giving options this Tuesday and every non-profit is vying for your attention -- and your donation.
Reasons why YOUR DONATION IS SO MEANINGFUL TO  the Pitt Hopkins Research Foundation…
Pitt Hopkins Research Foundation (@pitthopkins) 's Twitter Profile Photo

YOUR DONATION IS SO MEANINGFUL TO the Pitt Hopkins Research Foundation Reasons 1. We are the ONLY research organization in the world devoted to finding a cure for the debilitating effects of Pitt Hopkins Syndrome.

YOUR DONATION IS SO MEANINGFUL TO  the Pitt Hopkins Research Foundation 

Reasons 1. 
We are the ONLY research organization in the world devoted to finding a cure for the debilitating effects of Pitt Hopkins Syndrome.
Pitt Hopkins Research Foundation (@pitthopkins) 's Twitter Profile Photo

Giving Tuesday📣 YOUR DONATION IS SO MEANINGFUL TO the Pitt Hopkins Research Foundation Reasons 1. We are the ONLY research organization in the world devoted to finding a cure for the debilitating effects of Pitt Hopkins Syndrome.

Giving Tuesday📣
YOUR DONATION IS SO MEANINGFUL TO  the Pitt Hopkins Research Foundation 

Reasons 1. 
We are the ONLY research organization in the world devoted to finding a cure for the debilitating effects of Pitt Hopkins Syndrome.
Pitt Hopkins Research Foundation (@pitthopkins) 's Twitter Profile Photo

Giving Tuesday📣 YOUR DONATION IS SO MEANINGFUL TO the Pitt Hopkins Research Foundation Reasons #2. To Give: We are so incredibly close to meaningful treatments. Not decades away. Not years away. MONTHS away. Our first gene therapy trial is set to launch in 2025.

Giving Tuesday📣
YOUR DONATION IS SO MEANINGFUL TO  the Pitt Hopkins Research Foundation 

Reasons #2. To Give:
We are so incredibly close to meaningful treatments. Not decades away. Not years away. MONTHS away. Our first gene therapy trial is set to launch in 2025.
Pitt Hopkins Research Foundation (@pitthopkins) 's Twitter Profile Photo

Giving Tuesday📣 YOUR DONATION IS SO MEANINGFUL TO the Pitt Hopkins Research Foundation Reasons #3. To Give: We make every single one of your dollars count. We've accomplished groundbreaking progress that outshines organizations with far greater resources.

Giving Tuesday📣
YOUR DONATION IS SO MEANINGFUL TO  the Pitt Hopkins Research Foundation 

Reasons #3. To Give:
We make every single one of your dollars count. We've accomplished groundbreaking progress that outshines organizations with far greater resources.
Pitt Hopkins Research Foundation (@pitthopkins) 's Twitter Profile Photo

We are thrilled to announce the Million Dollar Bike Ride 2024 grant awardee, Dr. Simone Mesman! Details of the grant can be found here: orphandiseasecenter.squarespace.com/awarded-grants… #MDBR #PittHopkins #raredisease #research

We are thrilled to announce the Million Dollar Bike Ride 2024 grant awardee, Dr. Simone Mesman! 
Details of the grant can be found here: orphandiseasecenter.squarespace.com/awarded-grants…

#MDBR #PittHopkins #raredisease #research
Pitt Hopkins Research Foundation (@pitthopkins) 's Twitter Profile Photo

Pitt Hopkins Census Count: • 1,420 diagnosed with Pitt Hopkins syndrome 💙 • 51 diagnosed with Pitt Hopkins-Like syndrome (1 or 2) 💙 • 69 different countries🌎 • 48 states in the USA🇺🇸 • 0-52 years old🙋‍♀️🙋 More info here: pitthopkins.org/census. #PittHopkins #raredisease

Pitt Hopkins Research Foundation (@pitthopkins) 's Twitter Profile Photo

We are happy to share this news from Neuren today! Neuren Pharmaceuticals announced that the US FDA has granted Fast Track designation for NNZ-2591 for the treatment of Pitt Hopkins syndrome. neurenpharma.com/PDF/3aae3c99-c… #pitthopkins #neuren #raredisease #clinicaltrial

We are happy to share this news from Neuren today! 

Neuren Pharmaceuticals announced that the US FDA has granted Fast Track designation for NNZ-2591 for the treatment of Pitt Hopkins syndrome.
neurenpharma.com/PDF/3aae3c99-c…

#pitthopkins #neuren #raredisease #clinicaltrial
Pitt Hopkins Research Foundation (@pitthopkins) 's Twitter Profile Photo

#PittHopkins Census Count, end of quarter 1 in 2025... • 1,450 diagnosed with Pitt Hopkins syndrome 💙 • 54 diagnosed with Pitt Hopkins-Like syndrome (1 or 2) 💙 • 71 different countries🌎 • 48 states in the USA🇺🇸 • 0-52 years old🙋‍♀️🙋 More details pitthopkins.org/census.

Pitt Hopkins Research Foundation (@pitthopkins) 's Twitter Profile Photo

So very honored to announce The Pitt Hopkins Research Foundation's inaugural BE BETTER award in honor of Victor Pauca. You can read more on our Facebook page here: facebook.com/photo?fbid=114…

So very honored to announce The Pitt Hopkins Research Foundation's inaugural BE BETTER award in honor of Victor Pauca.
You can read more on our Facebook page here: facebook.com/photo?fbid=114…
Pitt Hopkins Research Foundation (@pitthopkins) 's Twitter Profile Photo

New from the Pitt Hopkins Research Foundation! * Latest research breakthroughs * Upcoming conferences * Community highlights Read the full newsletter: pitthopkins.org/wp-content/upl…

New from the Pitt Hopkins Research Foundation!

* Latest research breakthroughs
* Upcoming conferences
* Community highlights

Read the full newsletter: pitthopkins.org/wp-content/upl…
Pitt Hopkins Research Foundation (@pitthopkins) 's Twitter Profile Photo

📅Mark your calendars! The 2026 Pitt Hopkins Family Conference is going VIRTUAL! More access, more connection—same heart & hope. Join us for panels, research updates, support sessions & more—all online! pitthopkins.org/2026conference/ #PittHopkins #FamilyConference2026

📅Mark your calendars! The 2026 Pitt Hopkins Family Conference is going VIRTUAL!

More access, more connection—same heart & hope.

Join us for panels, research updates, support sessions & more—all online! 
pitthopkins.org/2026conference/
#PittHopkins #FamilyConference2026
Pitt Hopkins Research Foundation (@pitthopkins) 's Twitter Profile Photo

It’s time! Pitt Hopkins Awareness Day 2025 shirts are LIVE! Pre-order yours TODAY and they will ship out the first week of September just in time to get to everyone for AWARENESS DAY 2025! Remember, we are better together! 💙 jeannekay.com/pitt-hopkins #awareness #pitthopkins

It’s time! Pitt Hopkins Awareness Day 2025 shirts are LIVE! Pre-order yours TODAY and they will ship out the first week of September just in time to get to everyone for AWARENESS DAY 2025! Remember, we are better together! 💙
jeannekay.com/pitt-hopkins #awareness #pitthopkins
Pitt Hopkins Research Foundation (@pitthopkins) 's Twitter Profile Photo

A HUGE MILESTONE FOR OUR COMMUNITY! We are excited to share that our Gene Therapy clinical trial in partnership with Mahzi Therapeutics is live on clinicaltrials.gov/study/NCT07135…! More details, including study locations, will be shared in the near future! #pitthopkins #genetherapy

A HUGE MILESTONE FOR OUR COMMUNITY!
We are excited to share that our Gene Therapy clinical trial in partnership with Mahzi Therapeutics is live on clinicaltrials.gov/study/NCT07135…! More details, including study locations, will be shared in the near future! #pitthopkins #genetherapy