- Following 2.9K
- Followers 6.1K
- Engagement 4.23%
- Avg likes 220
- Avg comments 33
About Stephanie Stavros | Designer, Rare Disease Advocate
Stephanie Stavros | Designer, Rare Disease Advocate (@rosielifewithgrey) is a Personal blog creator on Instagram, also filed under Lifestyle and Blog personal. The account has 6,072 followers and 924 published posts. Recent posts average 220 likes and 33 comments, an engagement rate of 4.23%.
Stephanie Stavros | Designer, Rare Disease Advocate belongs to the nano tier, the band usually drawn between 1,000 and 10,000 followers. Stephanie Stavros | Designer, Rare Disease Advocate follows 2,882 accounts, so the audience is roughly 2.1 times the size of the list followed. Stephanie Stavros | Designer, Rare Disease Advocate uses an Instagram professional account. Flinque files Stephanie Stavros | Designer, Rare Disease Advocate under 4 categories, led by Personal blog and followed by Lifestyle, Blog personal and Digital Creator.
The Instagram bio for Stephanie Stavros | Designer, Rare Disease Advocate runs to 20 words across 4 lines. The bio tags #cozyhome, #cf, #CFGETLOUD and #Toronto. The bio mentions @cfgetloud. The latest activity Flinque has on record for Stephanie Stavros | Designer, Rare Disease Advocate dates from May 2025.
Story Highlights
Unlocking shows the title and cover image of every story highlight this creator keeps pinned to the profile.
924 Posts
Of the 10 most recent posts shown for Stephanie Stavros | Designer, Rare Disease Advocate, 6 are videos, 2 are single images and 2 are carousels. That mix leans toward videos. Stephanie Stavros | Designer, Rare Disease Advocate has built a substantial archive of 924 posts. Against the audience, that is roughly 6.6 followers for each post published. Stephanie Stavros | Designer, Rare Disease Advocate also keeps 48 story highlights on the profile. All 10 carry captions, averaging 94 words each. The captions are written mainly in English. Words that recur across them include it’s, feels, don’t, christmas and know. The captions tag #cf, #2026goals, #christmasmagic, #believe and #cʜʀɪsᴛᴍᴀs2025.
#cf
#2026goals
Watching my child at age 10 feels like standing in the doorway between two worlds.
One foot still touches the magic of Christmas, the wonder, the traditions, the quiet excitement that fills the house this time of year.
The other is beginning to notice how time moves faster, how moments change, how growing up happens whether we’re ready or not.
I don’t even know if he still believes anymore. And that’s okay.
Because belief doesn’t disappear all at once. Sometimes it softens, sometimes it shifts, and sometimes it simply looks different than it used to.
I see it in the little things.
The excitement that still shows up.
The questions that come with more thought behind them.
The way joy feels deeper now, even if it’s quieter.
At 10, childhood hasn’t left, but it’s stretching.
There’s more awareness, more curiosity, more heart.
And I find myself wanting to slow everything down, to hold this moment just a little longer.
This in-between space is beautiful.
Where wonder still lives, even as understanding grows.
Where magic isn’t lost, it’s just changing shape.
And maybe that’s the real gift.
Not holding onto childhood forever, but getting to witness it gently evolve.
Ten feels like a pause in time.
A soft in-between.
And I’m grateful I get to stand here and watch it unfold.
#christmasmagic
#believe
(I also blame most things on that.)
#cʜʀɪsᴛᴍᴀs2025
Merry Christmas Eve!!
#thenutcrackerballet
#snowmageddon2025
We wandered through glowing lights, tiny snow-filled moments, and the sweetest hands-on fun that had our kiddo completely enchanted. We were so pleasantly surprised to see older kiddos at this event having just as much fun as the little ones. I recommend taking a pause from shopping to check this out. Be sure to book ahead at
Your $15 entry quietly unlocks a lot of joy - a $10 OC gift card, cozy white-chocolate cocoa, a make-your-own snow globe, seasonal treats, and a stocking you get to colour in your own style.
But here’s the part that made it feel extra meaningful:
every single ticket helps bring new imaging equipment, including a CT scanner, to families right here in Durham Region.
A holiday outing that feels magical and makes a difference.
#christmasactivitiesforkid #OshawaCentre #HolidaySnowMagic #FamilyFun #OCPartner
#albuterol
#ventolin
#asthma
#cf
#cysticfibrosis
Cover photo 📸:
.
My advocacy work and my fight for rare disease medicine is what I am most proud of in life… but I did not walk that road alone. My courage was not born in isolation. It was stitched together by the unwavering love of my family. They were there for every scan, every hospital stay, every moment when I was too tired to believe in my own strength. Their faith in me became the foundation of my bravery.
Still, the part of my story that I am most proud of came after my personal win.
My fight didn’t end when I was able to breathe again. It deepened. It expanded. It led me to connect with #CF families across this country, and in doing so, I found something profound: a sense of belonging to a greater collective. A family forged not by blood, but by shared struggle, shared hope, and a fierce will to endure.
The people in this community have taught me what it means to hold light in the darkest places. To believe in a future that feels just out of reach. That kind of belief, the kind that persists against all odds, is the most powerful form of love I know.
I’ve never found it easy to say I’m grateful to have CF. But I am endlessly grateful for what it has brought into my life: a purpose, a voice, and a community I cherish deeply.
Advocacy has never felt like a duty. It has always felt like a calling. A privilege. A way to give back to the people who lifted me up so I could dream, speak, and fight for something bigger than myself.
So today, as I hold this medal in my hands, I hold it for all of us. For my family. For my CF Get Loud family. (Love you Jay and Mat). For every CF family I’ve met along the way. For the countless voices who continue to rise with courage, compassion, and conviction.
This is not a solitary achievement. It’s the most beautiful group project I’ve ever been part of.
Thank you for seeing me, for hearing us, and for believing in a world where cystic fibrosis is no longer a life sentence, but a story of strength, resilience, and unstoppable hope.
#kingcharlescoronationmedal
Happy Mother’s Day to my super hero sister. 💕
-
#surrogate
#surrogacyjourney
#motherhoodjourney
#defytheodds
#mothersdayreels
Stephanie Stavros | Designer, Rare Disease Advocate's engagement
Stephanie Stavros | Designer, Rare Disease Advocate's engagement rate on Instagram is 4.23%, between 3% and 6%, or 3 to 6 likes and comments per 100 followers. On a typical post that comes to about 1 like or comment for every 24 followers. Comments stay close to likes on Stephanie Stavros | Designer, Rare Disease Advocate's posts, at 220 likes and 33 comments on average, about 6.7 likes per comment.
Engagement rate
4.23%
- Avg likes
- 220
- Avg comments
- 33
- Interactions : followers
- 1 : 24
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Frequently asked questions
These answers about Stephanie Stavros | Designer, Rare Disease Advocate are generated from the Instagram profile data Flinque holds for the account.
Who is Stephanie Stavros | Designer, Rare Disease Advocate?
Stephanie Stavros | Designer, Rare Disease Advocate (@rosielifewithgrey) is a Personal blog creator on Instagram, also filed under Lifestyle and Blog personal. Stephanie Stavros | Designer, Rare Disease Advocate uses an Instagram professional account. The Instagram bio for Stephanie Stavros | Designer, Rare Disease Advocate runs to 20 words across 4 lines.
How many followers does Stephanie Stavros | Designer, Rare Disease Advocate have?
Stephanie Stavros | Designer, Rare Disease Advocate has 6,072 followers on Instagram (6.1K). Stephanie Stavros | Designer, Rare Disease Advocate follows 2,882 accounts, so the audience is roughly 2.1 times the size of the list followed. Stephanie Stavros | Designer, Rare Disease Advocate has built a substantial archive of 924 posts.
What is Stephanie Stavros | Designer, Rare Disease Advocate's engagement rate?
Stephanie Stavros | Designer, Rare Disease Advocate's engagement rate on Instagram is 4.23%, between 3% and 6%, or 3 to 6 likes and comments per 100 followers. On a typical post that comes to about 1 like or comment for every 24 followers. Comments stay close to likes on Stephanie Stavros | Designer, Rare Disease Advocate's posts, at 220 likes and 33 comments on average, about 6.7 likes per comment.
What does Stephanie Stavros | Designer, Rare Disease Advocate post about on Instagram?
Flinque files Stephanie Stavros | Designer, Rare Disease Advocate under 4 categories, led by Personal blog and followed by Lifestyle, Blog personal and Digital Creator. Of the 10 most recent posts shown for Stephanie Stavros | Designer, Rare Disease Advocate, 6 are videos, 2 are single images and 2 are carousels. The 10 recent Instagram captions Flinque holds for Stephanie Stavros | Designer, Rare Disease Advocate repeatedly use the words it’s, feels, don’t, christmas and know. Stephanie Stavros | Designer, Rare Disease Advocate's captions carry hashtags such as #cf, #2026goals and #christmasmagic. Stephanie Stavros | Designer, Rare Disease Advocate writes those captions mainly in English. The bio tags #cozyhome, #cf, #CFGETLOUD and #Toronto. Stephanie Stavros | Designer, Rare Disease Advocate keeps 48 story highlights, which open with a free Flinque account.
How do I contact Stephanie Stavros | Designer, Rare Disease Advocate for a collaboration?
Stephanie Stavros | Designer, Rare Disease Advocate's contact details are not published on Flinque's public profile. The Instagram bio links to 1 external site, and a free Flinque account opens that link. Brands with a free Flinque account can shortlist Stephanie Stavros | Designer, Rare Disease Advocate and use Flinque's outreach tools wherever a contact route is on file.
Links
Stephanie Stavros | Designer, Rare Disease Advocate's own Instagram profile is the one outbound link Flinque publishes for the account, and the bio link opens after signing up.
Public profile data sourced from Instagram. Flinque is not affiliated with Stephanie Stavros | Designer, Rare Disease Advocate.