10/19/2025
Honoring our friends who are incredible fighters and beautiful people 💜💜💜💜
💜🦋 THE PURPLE BUTTERFLY OF HOPE: HOW OCTOBER BECAME RETT SYNDROME AWARENESS MONTH 💜🦋
Every October, families around the world “go purple” to shine a light on Rett syndrome — a rare, complex neurological disorder that primarily affects girls (and yes, some boys too).
What began as a handful of parents exchanging letters in the early 1990s has blossomed into a global movement of awareness, remembrance, and hope.
Our story — told in purple ribbons and butterflies — is one of courage, connection, and love that never gives up.
🌎 ORIGINS OF A GRASSROOTS MOVEMENT
💌 In 1992, two parents — Paul Jochim and Rosalind Vargo, each with a daughter battling Rett syndrome — proposed dedicating a whole month to awareness.
Their message was simple but powerful:
“Through awareness comes understanding and support.”
By October 1993, the first Rett Syndrome Awareness Month had officially begun, with support from Kathy Hunter, founder of the International Rett Syndrome Association (IRSA).
Why October? 🍂
Because it’s a season of new beginnings — schools are in session, communities are active, and hearts are open.
Soon after, state proclamations followed (Illinois in 1994, Texas in 1997 under Governor George W. Bush), and parents in Canada joined with their own campaign as early as 1991.
📬 Back then, before Facebook or Instagram, families connected through an email listserv called RettNet.
Through RettNet, parents shared medical advice, prayers, and hope — proving that love could travel faster than any diagnosis.
Those early voices became the backbone of this movement, linking hearts across continents and laying the foundation for the global community we have today.
💜 WHY PURPLE? THE COLOR OF STRENGTH, DIGNITY & UNITY
Purple wasn’t chosen by chance.
In the early days, families debated between pink (for girls) and lavender (a gentler purple). But they wanted something inclusive — a color that also represented the rare boys with Rett.
Purple won. 💜
It became the official color because it symbolizes:
Courage – for every Rett warrior who faces daily battles with grace.
Strength & Dignity – for families who love fiercely and keep believing.
Compassion – for a world learning to see the person beyond the disability.
Now, every October, we “Go Purple” — lighting up landmarks, porches, and hearts.
💡 Niagara Falls glows purple.
💡 The Eiffel Tower lights the night.
💡 Schools, churches, and city halls join in with purple ribbons, shirts, and lights.
Each violet hue says:
You are not alone. We see you. We will never stop fighting for you.
🦋 THE BUTTERFLY: FROM HEARTBREAK TO HOPE
The purple butterfly became our community’s heartbeat.
In the late 1990s, a little girl with Rett passed away.
At her memorial, her family spoke of her as “free from her cocoon” — free from Rett’s restraints, flying high and whole.
That image — of transformation and freedom — spread through RettNet like wildfire.
Parents began sharing butterfly icons in emails, calling the girls who passed “Rett angels with wings.”
And from that grief, a global symbol was born.
The butterfly reminds us that:
🦋 Our children may feel “locked in,” but their spirits are vibrant and alive inside.
🦋 Transformation is possible — whether through small milestones, new therapies, or breakthroughs to come.
🦋 Their wings, when open, form an “X” — a quiet nod to the X chromosome where the MECP2 gene is found.
The purple butterfly embodies grace, remembrance, and hope.
Many families display it proudly on cars, shirts, tattoos, or memorials.
Others say that every time a butterfly appears nearby, they feel their child’s presence — a reminder that love endures beyond words or time.
“Whenever a butterfly passes by, let it be a reminder.”
🧬 SYMBOLS UNITED: THE IMAGE OF LOVE & UNITY
Imagine it:
A glowing lavender ribbon, shaped like DNA, surrounded by butterflies lifting toward a sunrise sky — a world map faintly behind them, showing we are one family. 🌍
Each butterfly carries a light — for every child, every angel, every parent who refuses to give up.
Together they rise, forming an endless circle of transformation and hope.
That’s what our symbols mean.
💜 The ribbon = Strength and awareness.
🦋 The butterfly = Transformation and remembrance.
🌎 The globe = Global unity and shared purpose.
✨ The light = Faith and unbreakable hope.
👨👩👧👦 “PARENT POWER” — THE HEART OF THE MOVEMENT
This month exists because of parents. Period.
In the 1980s, Kathy Hunter gathered a few families in her living room and built the International Rett Syndrome Association from scratch.
She reminded us:
“Even amid the hardship, look for the blessings our daughters bring.”
Then came a new generation of parent advocates — like Monica Coenraads, who co-founded the Rett Syndrome Research Foundation in 1999 after her daughter’s diagnosis.
Her foundation helped lead to the genetic discovery of MECP2 and the first treatments in development.
Hollywood joined too — in 2000, actress Julia Roberts narrated Silent Angels, showing the world the beauty and dignity of Rett children.
Parents made that happen.
And parents continue to carry it forward today — through Strollathons, church events, pancake breakfasts, butterfly releases, and heartfelt posts like this one.
We are the heartbeat of this movement. 💪
👦👧 INCLUSION MATTERS: BOYS HAVE RETT, TOO
For years, Rett syndrome was described as “only in girls.”
But that’s no longer true.
Some boys do survive with MECP2 mutations — often due to special genetic circumstances (like having an extra X chromosome or mosaicism).
They are rare, but they are here — and they belong.
As advocate Monica Coenraads said:
“Boys with Rett and their families are absolutely a vital part of our community. We’re in this together.”
When we say “Rett warriors,” that means every child — boy or girl. 💜
📘 QUICK FACTS: WHAT IS RETT SYNDROME?
🧬 A rare neurological disorder caused by a spontaneous mutation in the MECP2 gene on the X chromosome.
👧 Affects about 1 in 10,000 girls (and some boys).
💜 Not degenerative — children are fully present, aware, and capable of learning with the right supports.
💤 Causes loss of speech, hand function, and motor skills, as well as seizures, breathing irregularities, and sleep challenges.
🔬 Discovered in 1999 (gene identified by Dr. Huda Zoghbi).
🧪 First FDA-approved treatment: Trofinetide (2023) — and more therapies are in trials.
🙏 Hope: Rett is treatable — and potentially reversible.
🌍 HOW YOU CAN HELP THIS OCTOBER
✔️ Learn & Share: Post one fact a day. Awareness spreads by repetition.
✔️ Go Purple: Light your porch, your office, your heart.
✔️ Support Families: Offer meals, respite, or inclusion for siblings.
✔️ Advocate: Request your city’s proclamation or host a Purple Day at school.
✔️ Donate: Support trusted Rett orgs like IRSF or RSRT — every dollar fuels research.
✔️ Remember: Join a butterfly release or candlelight vigil to honor our Rett angels.
✔️ Speak Kindly: See the child, not the disability. Believe in their voice.
📚 FOR CLASSROOMS OR COMMUNITY POSTS
💜 “Purple stands for courage and unity.”
🦋 “The butterfly reminds us that our children are growing, transforming, and full of life inside — even when Rett tries to keep them locked in.”
Teachers, faith leaders, and friends — this is how you can help students understand:
Compassion, inclusion, and belief change everything.
🙏 A MONTH OF EDUCATION, REMEMBRANCE & HOPE
October isn’t just a color — it’s a calling.
Each year, we look back at how far we’ve come:
📍 From Dr. Andreas Rett’s first recognition in 1966,
📍 To Dr. Zoghbi’s gene discovery in 1999,
📍 To Dr. Adrian Bird’s reversal studies in 2007,
📍 To the first treatment approval in 2023,
📍 And now — gene therapy trials underway in 2025.
Each milestone tells the world: Rett syndrome is not hopeless.
Our children’s lives are full of meaning. Their smiles, their eyes, their laughter — they teach us daily what real strength looks like.
💜🦋 IN THE END…
October is Rett Syndrome Awareness Month.
We wear purple for courage.
We share the butterfly for transformation and remembrance.
We speak, post, and pray for hope — until every silent angel finds her voice.
Together, as one global family, we carry this flame forward — for every child, every parent, every angel, and every breakthrough still to come.
💜🦋 Through awareness comes understanding. Through understanding comes change. 🦋💜
