Paula Carpentier

[FAST @cureangelman]

Thanks to the efforts of our amazing AS advocates, FAST and ASF are proud to announce that we have achieved initial success in our fiscal year (FY) 2025 congressional appropriations requests.

Learn more:

https://t.co/7vcIZ3vnVl

[AngelmanSyndromeFdn @angelman]

News of the new Colin Farrell Foundation has the world interested in #AngelmanSyndrome. Jim Acosta invited ASF CEO, Amanda Moore, to discuss Angelman syndrome and its unique challenges.
Watch here: https://t.co/rKFcf0SYFR

[FAST @cureangelman]

We're thrilled to share an update from Ultragenyx regarding reported positive interim data from the ongoing Phase 1/2 study in patients living with deletion genotype Angelman syndrome after treatment with investigational GTX-102.
Read more: https://t.co/zquo0ipzcy

[FAST @cureangelman]

Today is a historic day for the Angelman syndrome community! FAST and the Angelman Syndrome Foundation (ASF - @angelman) are collaborating to host the Inaugural Angelman Syndrome Congressional Advocacy Day (ASCAD) in Washington, DC.

Read more:

https://t.co/J5Qh1fkbfw

[Historic Vids @historyinmemes]

The remarkable story of Tommy and Maryanne Pilling, the first couple with Down syndrome to be married in Britain, continues to inspire as they celebrate their 25th wedding anniversary in 1995. Despite facing discouragement and criticism, Tommy and Maryanne defied societal expectations and chose to embark on a journey of love and commitment. Their union holds great historical significance, symbolizing the triumph of love over adversity.

Down syndrome, a genetic condition characterized by intellectual, educational, and physical disabilities, did not deter Tommy and Maryanne from building a strong and enduring marriage. Although individuals with Down syndrome typically have a shorter life expectancy of around 40 years, Tommy and Maryanne have defied the odds and stood as a testament to the warmth, friendliness, and caring nature that people with this condition possess.

Their love story began when Maryanne met Tommy at a day center. Maryanne's sister fondly recalls the moment, stating that Maryanne's life changed forever upon meeting him. She remembers the immense joy on Maryanne's face and her endless discussions about Tommy.

Kisses and hugs were the foundation of their relationship. Tommy, with a plastic ring he acquired from a vending machine, romantically proposed to Maryanne, who joyfully accepted without hesitation.

Sadly, tragedy struck on January 1st, 2021, when Tommy succumbed to COVID-19 at the age of 61. Despite the heartache, Maryanne finds solace in the fact that Tommy continues to visit her in her dreams.

Tommy and Maryanne's remarkable love story demonstrates that societal pressure, physical limitations, and other challenges are no match for the power of true love. They shattered barriers and proved that anyone, regardless of their circumstances or how they are perceived by others, can find happiness and marry their beloved. Their tale is a testament to the indomitable spirit of love, which knows no bounds.

[Paula Carpentier @PikaCarp]

#WalkForAngelman

[FAST @cureangelman]

🚨JUST IN: Ultragenyx has received FDA approval to expand their clinical trial for Angelman syndrome in the US 🚨

Read more here: https://t.co/J1KbPk9OQ2

[Paula Carpentier @PikaCarp]

Check out Team Henry's team fundraising page - https://t.co/9rfU4sK1VY

[Midwest vs. The Rest @midwestern_ope]

nobody:

midwesterners reaching an all time satisfaction kicking this off

[The Adventures of Team Sean @TeamSean24_Gib]

Morning 🌍 today is International Angelman Syndrome Day. #TeamSean will be wearing 💙 here in 🇬🇮 & my sis & bruv will be in 💙 in Liverpool 🇬🇧 if you can plse wear 💙 take a pic, tag me & share @ #AngelmanSyndrome thanks I really appreciate the support ❤️💪 #ForwardAlwaysForward

[FAST @cureangelman]

This great article by @MaryEDivine profiles Meghan’s son William, who lives with Angelman syndrome, and how Meghan, her husband Jesse, and their younger son Henry support him.

Read the full piece here:

https://t.co/pFuP06b3a9

[Alex Stein #99 @alexstein99]

The massive explosion and poisoning of American citizens should be a much bigger story….why isn’t the media talking about Ohio more?

[Burnsville Police @BurnsvillePD]

Hello! We are trying identify this female. Do you know who she is? If so, can you please call the Burnsville PD through dispatch. She is safe & here at the PD. and we would like to get her back home! She is non verbal and was found in the area of Burnsville Pkwy/Co Rd 5.

[Augie-Sanford GCGP @ASGCGP]

The directors call it grad school.
The students call it 🧬 Top Gene 🧬

#GeneChat Like this tweet to vote for the @ASGCGP 1st years in #Hallogene22

[FAST @cureangelman]

#ICYMI: In 2008, a group of visionary parents, led by Paula Evans, dedicated themselves to a singular mission: to cure Angelman syndrome.
Last week, we got some major news about our journey 💙

(1/2)

[WillCarp @wcarped]

@NASCAR moving from Road America to Chicago streets is literally GTA, better not be a night race.

[Chaska Police Department @ChaskaPD]

An officer is at @WCSO_Minnesota learning about law enforcement stress, trauma, and peer support. The clinician teaching brings Kali, a trained therapy dog. Retweet if you think we should convince the Chief to get one for our department 🐶

[Red Bench Bakery @Redbenchbakery]

Just posted a photo @ Red Bench Bakery https://t.co/Ss5zGrIXhv

[Red Bench Bakery @Redbenchbakery]

#smallbusinesssaturday @ Minnesota https://t.co/AUlQaiS575

[Red Bench Bakery @Redbenchbakery]

Wow! All doors now open. No parking on 5th Street yet. #soon #beautiful #chaskafacelift @ Red Bench Bakery https://t.co/pcNRPOt84u