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Angelman Syndrome Foundation

@angelman_asf

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ASF works to advance the awareness & treatment of Angelman syndrome, while helping families impacted by AS. #angelman_asf

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Behind every child with profound special needs is often a sibling quietly learning lessons the world can’t teach!

They learn patience when things aren’t easy, empathy when others don’t understand, and pure love that asks for nothing in return!

Truly, a kind of compassion that only comes from walking a journey like theirs. So, to every sibling walking this journey—you matter, you’re seen, and the love you give makes a difference. 🩶

#specialneeds #angelmansyndrome #Siblings #miracleleague #specialneedssiblings @bethanychildrens @dougie_doug_jr

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🐪 CARRIED THROUGH THE SAND
15 Days for Chromosome 15

💙 DAY 5!! (Excuse the mistake 🙈)— COMMUNICATION
📍 54 km completed of 150 km!

A voice without words.

Imagine having so much you want to say, but not being able to speak a single word.

For many individuals living with Angelman syndrome, communication is one of their greatest challenges.

Samson is nonverbal, but that doesn’t mean he has nothing to say. 💙

He communicates through photographs, touch buttons, his iPad, facial expressions, body language and his beautiful laughter, oh and hair pulling! 😅

Every new way he learns to express himself is a milestone worth celebrating.

But there are heartbreaking moments when I simply cannot understand what he needs. Is he hurting? Is he frightened? Is something wrong?

As his mum, I dream of hearing him say “Mummy” one day. But more than anything, I want him to be able to express his needs, feelings and choices.

Research into restoring UBE3A function gives us hope for the future. Until then, we will keep finding ways to help Samson communicate and be understood.

Because having no spoken words doesn’t mean having no voice.

💙 Today’s call to action:

Leave a 💙 for everyone who communicates without words.

Their voices deserve to be heard too.

Please share this post to help raise awareness of Angelman syndrome.

🐪 Day 5/15 | 54/150 km
One kilometre at a time. One conversation at a time. One step closer to greater awareness.

#CarriedThroughTheSand #15DaysForChromosome15 #AngelmanSyndrome #AngelmanAwareness #nonverbalcimmunication

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“You did not fail this trial. Your child did not fail this trial.”

For Angelman families who carried so much hope into ASPIRE, those words matter.💥

Amanda read the results as the CEO of the @angelman_asf , and then as Jackson’s mom.

That second read hurt.💔

Her message makes room for disappointment while holding onto something no trial can measure: every person’s worth.

Read her heartfelt reflection on Jackson, the families who made research possible, and finding reasons to keep going: Link in first comment 👉

#AngelmanSyndromeFoundation #AngelmanCommunity #Clinicaltrial #AngelmanSyndromeNews #ASPIRE

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It's always a beautiful day when we get to see our favorite doctors! Annual Boston trip to the Angelman Clinic 😇❤️. We are so grateful for Dr Keary & Dr Thibert🍀😇🥰❤️ #angelmansyndrome #angelmanadventureswith_tommy #tommystravels #travelingtommy

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**apologies the middle two videos failed to upload, please check my highlights for the full videos ❤️❤️**
#💙🐪 DAY 3/15 — SEIZURES & EPILEPSY

Carried Through the Sand — 15 Days for Chromosome 15

30.9km done ✅ 119.1km to go 😀

150km. 15 days. One mission. 💙

For many children living with Angelman syndrome, seizures are part of everyday life. But what people don’t always see is the impact they have beyond the seizure itself.

The fear. The exhaustion. The sleepless nights. The hospital admissions. The loss of skills that have taken months or even years to achieve.

Samson has experienced different types of seizures, including prolonged seizures requiring emergency treatment. We’ve watched him fight through some incredibly difficult periods, only to have to rebuild skills he had already worked so hard to learn.

And yet, he keeps going. 💙

Today, as I continue my journey through the desert, I’m raising awareness not only of seizures, but of the strength of the children and families navigating them.

💙 Today’s call to action: Leave a blue heart in the comments for everyone living with seizures or epilepsy, and for the families standing beside them.

Please share this post. Awareness leads to understanding, and understanding can make a difference.

#CarriedThroughTheSand #15DaysForChromosome15 #AngelmanSyndrome #AngelmanAwareness EpilepsyAwarenesS

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Some races ask more of you than others. This one required digging deep, pushing through the hard moments, and reminding myself over and over again of my WHY. ❤️🦁

When your legs are tired, your body is hurting, and the finish line feels far away, you have to find something deeper to carry you forward. For me, that something is Luke. It’s the Angelman syndrome community. It’s the families who deserve more, the children who deserve a brighter future, and the hope that fuels every single mile.

I don’t have to do this. I GET to do this. And even on the toughest days, I never forget how lucky I am to have a reason bigger than myself.

And because of YOU, this journey has raised $15,000! 🥹❤️

To everyone who donated, shared a post, sent an encouraging message, cheered me on, or reminded me why I started when the miles got hard — THANK YOU. You are part of this. Every dollar represents hope, progress, and a commitment to making life better for individuals living with Angelman syndrome.

This race may have tested me, but it also reminded me of what happens when determination meets purpose and a whole community rallies behind something bigger than themselves.

For Luke. For our Angelman warriors. For the families who understand this journey. For a future filled with more possibilities.

$15,000 raised. So much more work to do. And we are NOT stopping. 🦁❤️

#RunForLuke #AngelmanSyndrome #LukesLions #EveryMileMatters #angelmansyndromefoundation

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Medal Monday!!
Being a coach is like being a parent… your heart swells with pride as you watch your kids- or athletes- cross their finish line, knowing all the hard work, sacrifice and dedication it took to set a big goal and chase after their dream.
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And dreaming is something we in the Angelman community know a lot about. We dream big dreams, then dig deeper for our friends, our kids, and all those who have rallied to support us to make our dreams come true.
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This year, not only did the Windy City Angels have 68 runners (plus 2 push-assist parent/Angel teams) run the Chicago Marathon, they raised over $300,000 for the @angelman_asf and over $1.4 million dollars cumulatively since starting a team running it 10 years ago!
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I am truly honored beyond words to not only serve as volunteer coach of this amazingly inspiring group (and missed being there in person to cheer and celebrate with them this past weekend), but to have 2 incredible runners who fundraised and ran in honor of Hayden and the Steamboat Angels, @kalebthecook -who wears his heart on his sleeve and works with our Angels at @steamboatstars , and @hotskierchick (she ran the fastest Angel runner time at Chicago!) who has cheered us on from afar and now knows firsthand what stirs our passionate hearts.
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Speaking of dreams, @juiceuva has worked with me for over a year with a big goal, race XTERRA World Championships at age 50 and see what she could do if she dedicated herself to the training while juggling running a full-time business, raising 2 active kids, and balancing family time. She not only did that, she placed 2nd in the 50-54 age group! So grateful she trusted me and the process on her journey to the start line.
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And as a parent, I have to give a shout out to @josiahmiddaugh . He and @ingrid_middaugh7 have raised awe-inspiring children, following in (and passing) their father’s footsteps. @sullivanmiddaugh won the @xterraplanet World Championship, dad Josiah came in 7th and younger brother Porter, 8th. From watching our kids play relay races together in Maui the night before Josiah won Worlds 11 years ago to him celebrating w/them at the finish via livestream made my momma heart smile!

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All 26.2 Miles turning pavement into progress.
#angelmansyndromefoundation #summit4angelman #chicagomarathon #windycityangels

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DAY 1 OF 15 💙🐪 | DIAGNOSIS DAY

Carried Through the Sand — 15 Days for Chromosome 15

Two camel rides today!
🐪 Morning: 5.8 km ✅
🐪 Evening: 5.6 km ✅

Then that’s 11.4 km down, 138.6 km to go!

Six years ago today, our lives changed forever when Samson was diagnosed with Angelman syndrome.

Today, on the anniversary of his diagnosis, I’m beginning a 15-day journey across the desert to raise awareness of the condition that has shaped so much of our lives.

Over these 15 days, I’ll be sharing Samson’s story, the challenges, the joy, the science, the progress and the hope for the future.

Day 1 is about diagnosis. The moment we received the news, the emotions that followed, and everything I wish I’d known then.

Thank you for being here and for carrying this message with us. 💙

Please share our journey. You never know who might need to hear it.

#CarriedThroughTheSand #AngelmanSyndrome #Chromosome15 #AngelmanAwareness

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for my 3rd marathon of the year, I decided a combination of finding my why in running, playing club volleyball, running a little, and bike bar crawling would be the most enjoyable training plan

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Marathon #4 in the books and WHAT.A.FUN.RACE!!!!

Representing the Windy City Angels and all the incredible individuals with Angelman Syndrome was at the forefront of my thoughts for most of my run today, I am so grateful I was invited to join the team this year and cannot begin to express how grateful I am for everyone who donated, encouraged and prayed for our team this weekend! Over $300,000 was raised to help advance research and fight for a cure for Angelman!

Stay tuned for #5, here’s to recovering in the next 6 days 🫣😅

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Let’s go Logan and Todd! Your Keshet family is cheering you all the way to the finish line 🏃‍♂️🌈 logan and his dad at the chicago marathon

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