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Coats Plus Foundation

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Telomere Disease Awareness + Developing a Cure
CoatsPlusFoundation.com

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Everyone has a plan until they get punched in the face. Navigating grief feels like a fog, disorienting and uncertain. But taking one painful step, then another, can lift the haze.

https://www.youtube.com/watch?v=rubOlcL3bfU
#GriefJourney #NavigatingGrief #FindingHope #MentalWellness #Resilience #HealingProcess #Inspiration #LifeAfterLoss #MovingForward by @coatsplusfoundation

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3 months ago

3 hours outside St. Louis, at a celebration of life, I received incredible news. Liam's MRI showed calcification stopped and cysts were shrinking. This news arrived amidst the grief of losing Wyatt to the same disease. A moment of profound hope amidst loss.

🎧 Watch the full episode here: https://youtu.be/rubOlcL3bfU
#Hope #Grief #Miracle #Family #Resilience #Love #Inspiration #Life #Loss #Strength by @coatsplusfoundation

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3 months ago

What a night! 🎲✨

Casino Night was an absolute blast—over 180 community leaders, business owners, entrepreneurs, and genuinely good people coming together for an unforgettable evening.

Thanks to this incredible community, we raised over $40,000 in a single night in support of the Coats Plus Foundation. The energy, generosity, and love in the room were unreal.

From the bottom of our hearts—thank you to everyone who attended, sponsored, volunteered, donated, and helped make this night so special. This is what happens when community shows up with purpose. ❤️♠️♣️

More to come… this is just the beginning. by @coatsplusfoundation

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9 months ago

We're humbled to present a special piece curated and written by the talented Nina Rodriguez of @griefandlight, based on her heartfelt interview with the Docobo family. They're on a mission to find a cure for their son after losing their first child to this mysterious disease. Join us in spreading awareness about this urgent cause, and read their inspiring story on November 1st! #grief #griefandloss #griefjourney #griefawareness #griefcommunity #caregivingsupport #griefstagram #letsgetgriefy #getgriefy by @coatsplusfoundation

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a year ago

🏃‍♀️ Our first Coats Plus Foundation @coatsplusfoundation virtual 5K raised over $6000!!! 🙌🏻 over 70 people donated and/or ran and we are super grateful (as always). We didn’t have much time to promote so I’d say we did pretty damn good. 😊 It’s these little building blocks that add up to where we can get Liam’s gene therapy research up and running at the University of Miami as soon as we reach the 100k mark. I could thank you all a million times over and it still wouldn’t be enough… but I’m going to anyway… THANK YOU!!! ✨🩷 *We are a 501(c)(3) nonprofit organization. All donations are tax-deductible. if you or a contact of yours would like to contribute for business purposes, it can be written off. by @coatsplusfoundation

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a year ago

We met Chris Hush from NBC 6 NBC 6n interview about our family after launching our GoFundMe — a story about our two boys diagnosed with a rare and terminal genetic illness, Coats Plus Syndrome. Chris kept in touch, checked in with us over time, and kindly returned to do a follow-up story after Ethan passed.

Fast forward to today: he came to our home again. But this time, we had more to share — and, for the first time in a while, a story rooted in hope.

We are incredibly grateful to have connected with a respected geneticist at the University of Miami, Dr. Mustafa Tekin, who has agreed to take on our case. While no one in science can make absolute guarantees, he said “YES” to developing a gene therapy for Liam. That word alone — yes — feels like a miracle. 🙏🏻✨

After a few Zooms and one in-person meeting, Dr. Tekin estimates this effort will take 2–3 years, $5 million, and $100,000 in startup costs. That initial funding supports a dedicated lab team, materials, equipment, FDA-related costs, and more. It’s a massive, complex endeavor — because every single cell in Liam’s body is affected, not just one organ or system. The delivery method, called a vector, must reach every single gene in every single cell. This hasn’t been done before — it’s far more complex than targeting one area, like the liver or brain.

But here’s the most incredible part: if successful, this therapy could pave the way for treating not just Coats Plus, but other rare diseases — which affect 7% of the global population. Let that sink in. 🧬🌍🤯

My former self might’ve crumbled under the weight of how impossible this all seems — the heartbreak, the financial mountain, the odds. (Okay, I did crumble for a day — progress, right? 😅) But I’ve learned something: the universe doesn’t respond to doubt. It responds to alignment. Our thoughts, beliefs, and actions have to match what we want to create. I believe in this. I believe in Liam. And I believe we can do hard things — especially when we do them together.

We’ll keep you updated as things unfold. Please share. Spread the word. Hope is here. ✨ Link to the donation page of Coats Plus Foundation in comments below ⬇️ and gofundme. by @coatsplusfoundation

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a year ago

Caregivers need to be cared for, too.

In this moving episode of the @griefandlight podcast, I speak with Bryan and Danielle Docobo who share their journey through profound loss, love, and advocacy following the death of their son Ethan, who passed away from the #raregeneticdisorder #CoatsPlusSyndrome. 🧬

As parents navigating complex grief while raising their surviving son Liam, who lives with the same diagnosis, Bryan and Danielle speak candidly about the emotional, spiritual, and logistical realities of their path, as they work against time to save him.

The @coatsplusfoundation is a dedicated organization committed to battling the symptoms and seeking a cure for Coats Plus Syndrome, a rare and life-shortening disease. Their mission is to support affected individuals and their families, fund cutting-edge research, and raise awareness about this challenging condition. Together, they strive to improve the quality of life for those impacted by Coats Plus Syndrome and move closer to a future where this disease is no longer a threat.

Tune into this potentially life-saving episode wherever you get your podcasts, or comment SAVINGLIAM below ⬇️ to receive the direct link.

🔍 “Grieving One Child, Racing to Save Another: The Docobo Family’s Mission of Hope” 🎧

Bryan, Danielle, Liam and many other families navigating #geneticdiseases need our help *now*.

Visit @coatsplusfoundation to learn more about this disease, the progress on a possible cure, and how you can help.

♻️ Please share this post to help us reach as many people as possible. You never know who may hold the next piece of this puzzle.

💜
Nina

#griefandloss #childloss #childlossawareness #siblingloss #rarediseaseawareness #telomeres #crisprcas9 #genomeediting #lossofachild #griefsupport #griefpodcast #griefawareness #griefcommunity #itsoktonotbeok #grieftalk #lossofalovedone #leukodystrophy #leukodystrophyawareness by @coatsplusfoundation

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a year ago

How do you keep hope alive when you find yourself in a race against time to save your child’s life?

In this moving episode of the @griefandlight podcast, I speak with Bryan and Danielle Docobo (@coatsplusfoundation) who share their journey through profound loss, love, and advocacy following the death of their son Ethan, who passed away from the #raregeneticdisorder #CoatsPlusSyndrome. 🧬

As parents navigating complex grief while raising their surviving son Liam, who lives with the same diagnosis, Bryan and Danielle speak candidly about the emotional, spiritual, and logistical realities of their path, as they work against time to save him.

Tune into this potentially life-saving episode wherever you get your podcasts, or comment SAVINGLIAM below ⬇️ to receive the direct link.

🔍 “Grieving One Child, Racing to Save Another: The Docobo Family’s Mission of Hope” 🎧

Bryan, Danielle, Liam and many other families navigating #geneticdiseases need our help *now*.

Visit @coatsplusfoundation to learn more about this disease, the progress on a possible cure, and how you can help.

♻️ Please share this post to help us reach as many people as possible. You never know who may hold the next piece of this puzzle.

💜
Nina

#griefandloss #childloss #childlossawareness #siblingloss #rarediseaseawareness #telomeres #crisprcas9 #genomeediting #lossofachild #griefsupport #griefpodcast #griefawareness #griefcommunity #itsoktonotbeok #grieftalk #lossofalovedone #leukodystrophy #leukodystrophyawareness by @coatsplusfoundation

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a year ago

My dear friend Tia Crystal @tiacrystalart award-winning artist, author, peace ☮️ activist and humanitarian has dedicated her life to inspiring change through the power of art and creativity and is hosting an incredible event this Saturday! ✨

@tiacrystalart will be exhibiting her latest collection, a radiant fusion of fine art 🖼️ and crystals, each piece created with deep intention and a celebration of life.

***A portion of the evening’s proceeds (10% of all art sales) will be donated to our personal mission @coatsplusfoundation - The Coats Plus Foundation - in hopes of finding a cure for Coats Plus Syndrome, the neurodegenerative life-shortening condition both of my sons have. 🧬

Please join us in this remarkable event showcasing her phenomenal work. All are welcome. She has poured every ounce of her heart ♥️ and soul into this for months on end. 🙏🏻

JUNE 7TH - 8.50PM
EVENT STARTS 8.50PM TILL MIDNIGHT
THE FRIENDSHIP CENTER GALLERY
1406 E LAS OLAS BLVD
FORT LAUDERDALE 33301 by @coatsplusfoundation

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a year ago

MAJOR FATHER’S DAY ⛳ GOLF EVENT!!!

3rd Annual Dads Helping Dads Father’s Day Golf Tournament Benefitting the Coats Plus Foundation

📅 Friday, June 13th | 📍 Country Club of Coral Springs

The cause started as a few dads getting together for some laughs and a round of golf…
Has turned into a powerful movement of love, purpose, and legacy 💙

This year, Dads Helping Dads is teeing off with the mission of supporting the Coats Plus Foundation—founded by one of our local fathers, Bryan Docobo, whose two young sons were both diagnosed with Coats Plus Syndrome 🧬💔

This rare genetic disorder causes:
👁️ Blindness
🧠 Brain calcifications & cysts
🦴 Bone marrow failure
⚠️ And it’s almost always fatal in childhood.

But there’s hope—and you can help.

💥 Let’s rally together to:
• Fund gene therapy & stem cell research 🧪
• Support families facing the unimaginable 🤝
• Give kids fighting this disease a chance to LIVE ✨

WAYS TO SUPPORT:
🎟️ $165/player | 🏌️‍♂️ $600/foursome
📢 Sponsorships from $250 to $10,000
💸 Or simply donate with heart

Register or donate now:
https://parkland-fathers-day-golf-event-2025-supporting-coats-plus.perfectgolfevent.com/

Whether you’re a scratch golfer or just here for the good vibes—we welcome you!

This Father’s Day, we’re not just hitting balls.
We’re hitting back—against rare disease.
For our sons. For our families. For the cure.

💚 Swing with us. Stand with us. Spread hope.

#FathersDayGolf ⛳ #DadsHelpingDads 👨‍👧‍👦 #CoatsPlusFoundation 🧬 #GolfForACure 🏌️‍♀️ #TelomereAwareness #LegacyOnTheGreen 🌿 #HopeForTheKids by @coatsplusfoundation

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a year ago

🧬 Coats Plus Foundation meeting 2️⃣. Behind the scenes today with founder @bryandocobo as he discusses patient advocate onboarding, ongoing family communication strategies and upcoming charity golf ⛳️ tournament that has raised $4500 from player entries alone!

Navigating a non-profit from his dining room is anything but glamorous. He runs a successful law practice and two weekly business networking groups. He’s a dad on a mission to save his kids and give voice to the Coats Plus Syndrome 🌎

#coatsplussyndrome #rarediseaseadvocacy #charitygolftournament #raisingawarenesstogether by @coatsplusfoundation

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a year ago

✅ Officially launched the Coats Plus Foundation in March. Super stoked for all that is to come. by @coatsplusfoundation

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a year ago