CDG CARE

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CDG CARE is a nonprofit organization founded by parents to support families affected by CDG.

10/20/2026

💚 Meet Lucas, from Brazil, one of our 2026 Emmett's Legacy Fund grant recipients! 🇧🇷

Through Emmett’s Legacy Fund, Lucas received a special postural brace, wheelchair accessories, and splints, a full set of supports working together to keep him comfortable, well-positioned, and ready for each day.

His family writes: “Emmett’s legacy lives in every child’s smile, bringing lightness and hope to everyday life.”

Created by the Nguyen family in Emmett’s honor, this fund helps children with CDG worldwide get equipment insurance won’t cover. Thank you, sweet Emmett. 🌥🐘

Learn more under Resources at www.cdgcare.org

10/13/2026

📣 TONIGHT! 📣

Our CDG Community Connection with Mary McDirmid, ChSNC®, ChFC® of All Needs Planning is happening TONIGHT, and this session will NOT be recorded. If you’ve been meaning to join, tonight is the night!

🗓 Tuesday, October 13th
⏰ 7PM EST
💻 Virtual, free for our CDG families

Mary will cover funding strategies, cost of care, legal and support strategies, public benefits eligibility, and how to plan for your whole family. Whether you’re just getting started or already have a plan in place, you’ll walk away with something new.

Come with your questions. We’d love to see you there! 💚

Register here: https://us06web.zoom.us/meeting/register/zh9iUY7mRNmtC6N0nxVo6g

10/13/2026

💚 Meet Bennett, from the USA, one of our 2026 Emmett's Legacy Fund grant recipients! 🇺🇸

Not every life-changing piece of equipment is a chair or a walker. Through Emmett’s Legacy Fund, Bennett’s family received electronic safety locks for their exterior doors and fenced-in yard, so Bennett can explore his home freely while his family breathes a little easier.

His mom writes: “These locks have brought peace to our home. Bennett gets more freedom and we don’t have to constantly be worrying about elopement. We are incredibly grateful to Emmett’s family for bringing safety and comfort to our home.”

Created by the Nguyen family in Emmett’s honor, this fund helps children with CDG worldwide get the equipment and supports insurance won’t cover. Thank you, sweet Emmett. 🌥🐘

Learn more under Resources at www.cdgcare.org

10/09/2026

💚 Meet Alexis, from the USA, one of our 2026 Emmett's Legacy Fund grant recipients! 🇺🇸

Through Emmett’s Legacy Fund, Alexis received a Levity Ora Walker, opening the door to more independence and a whole new way to explore the world around her.

Her mom writes: “This is something I could not have afforded on my own, and your kindness means more to our family than I can put into words. You have given her something that will help her gain more independence and experience the world in a whole new way. We are truly grateful to have such caring and generous people supporting her. Thank you from the bottom of my heart.”

Every step forward is a step Emmett helped make possible. 💚

Created by the Nguyen family in Emmett’s honor, this fund helps children with CDG worldwide get equipment insurance won’t cover. Thank you, sweet Emmett. 🌥🐘

Learn more under Resources at www.cdgcare.org

10/09/2026

Big things are happening at DEEP! 💜

Formerly DEE-P Connections, DEEP has spent the past several months listening to families, clinicians, researchers, advocates, and partners to help shape what comes next for developmental and epileptic encephalopathies (DEEs) and other severe neurological impairments (SNIs).

And now, they’re ready to share it.
✨ A new name and brand
✨ A new five-year Strategic Plan
✨ A completely redesigned website
✨ A bigger vision for connecting and supporting the community

This is about more than a new look. It’s about building on years of work while creating a stronger, more connected future for families impacted by DEEs and other SNIs.

The mission hasn’t changed. The vision has grown. We’re proud to partner with DEEP and excited to celebrate this next chapter with them. 💜

Explore what’s new at www.dee-p.org

10/06/2026

💚 Meet Siena, from the USA, one of our 2026 Emmett's Legacy Fund grant recipients! 🇺🇸

Her mom writes: "Thank you for giving Siena a space of her own to learn and eat with her family."

A seat at the table. A seat in the classroom. A safe seat for the ride in between. That's what Emmett's legacy looks like. 💚

Created by the Nguyen family in Emmett's honor, this fund helps children with CDG worldwide get equipment insurance won't cover. Thank you, sweet Emmett. 🐘🌥

Learn more under Resources at www.cdgcare.org

10/03/2026

💚 Meet Romeo, from Mexico, one of our 2026 Emmett's Legacy Fund grant recipients! 🇲🇽

His mom writes: "This equipment is amazing both at home and on the go, keeping Romeo in the best and most comfortable position. We absolutely love it!"

Comfort at home. Freedom on the go. That's what this fund is all about. 💚

Created by the Nguyen family in Emmett's honor, this fund helps children with CDG worldwide get equipment insurance won't cover. Thank you, sweet Emmett.

Learn more under Resources at www.cdgcare.org

10/01/2026

Happy Birthday, October stars! ⭐️
You shine as bright as the leaves turning gold
Wishing you warmth, laughter, and love
And more joy than your heart can hold. 💚

Kaiah, PMM2-CDG 🇺🇸
Freia, PGAP3-CDG 🇺🇸
Rory, ALG13-CDG 🇺🇸
Samantha, ALG6-CDG 🇺🇸
Thomas, PMM2-CDG 🇦🇷
Ana, PMM2-CDG 🇧🇷
Beatrice, SLC35A2-CDG 🇫🇮
Romeo, PIGA-CDG 🇲🇽
Callan, PIGL-CDG 🇺🇸
Camille, PMM2-CDG 🇺🇸
Joseph, MAN1B1-CDG 🇦🇺
Kasko, ST3GAL5-CDG 🇩🇪
Nash, TRAPPC11-CDG 🇺🇸
Scarlett, PMM2-CDG 🇺🇸
Sophia-Mary, STT3A-CDG 🇬🇧
Daisy, PIGN-CDG 🇦🇺
Erekle, PMM2-CDG 🇬🇪
Sophia, STT3A-CDG 🇺🇸
Zofia, PMM2-CDG 🇵🇱
Reign, NGLY1 🇺🇸
Sara, PIGQ-CDG 🇮🇹
Vicente, PMM2-CDG 🇧🇷
Ariana, SRD5A3-CDG 🇨🇦
Jacob, PMM2-CDG 🇺🇸
Ela, SRD5A3-CDG 🇨🇦
Ethan, PMM2-CDG 🇬🇧
Mateo, COG8-CDG 🇺🇸
Sean, PMM2-CDG 🇺🇸
Aly, PIGB-CDG 🇺🇸
Leni, TRAPPC11-CDG 🇩🇪
Ruby, PMM2-CDG 🇬🇧
Nora, ALG13-CDG 🇺🇸
Jack, PIGO-CDG 🇺🇸
Charlotte, PMM2-CDG 🇦🇺
Elizabeth, 🇺🇸
Joshua, ALG1-CDG 🇺🇸
Matías, PMM2-CDG 🇺🇸
Allison, SLC39A8-CDG 🇨🇦
Elena, PMM2-CDG 🇪🇸
Isla, MAN1B1-CDG 🇺🇸
Abby, MAN1B1-CDG 🇦🇺
Lucas, PIGA-CDG 🇧🇷
Samuel, PMM2-CDG 🇺🇸
Mariella, PMM2-CDG 🇺🇸
Sergy, PMM2-CDG 🇷🇺
Alessandra, 🇵🇪
Valentina, ALG13-CDG 🇦🇷
Isla-Rose, PMM2-CDG 🇮🇪
Kairo, ALG1-CDG 🇺🇸
Lauren, ALG3-CDG 🇺🇸
Caroline, DPAGT1-CDG 🇸🇪
Jayce, PMM2-CDG 🇺🇸
Marithza, 🇺🇸
Ann-Christin, SLC39A8-CDG 🇩🇪
Breckyn, PMM2-CDG 🇺🇸
Алиса, PMM2-CDG 🇧🇾
Adam, RFT1-CDG 🇱🇧
Annelise, DPAGT1-CDG 🇲🇽

09/30/2026

🌍 CDG CARE Goes Global: RADICAL-CDG in Leuven, Belgium!

We are excited to have Dr. Iván Martínez-Duncker, CDG CARE Scientific Advisor, representing CDG CARE and our global community at RADICAL-CDG in Leuven, Belgium this week!

Iván is making the trip to participate in important conversations focused on strengthening global collaboration, connecting patient priorities with scientific and therapeutic innovation, and identifying new opportunities to improve clinical care and accelerate progress for individuals and families living with CDG.

International collaboration is essential in rare disease. Bringing together patients, advocates, clinicians, researchers, and therapeutic developers from across regions helps us share knowledge, identify common priorities, and build stronger pathways toward meaningful solutions.

We are incredibly appreciative of Iván’s commitment to traveling to Belgium on behalf of CDG CARE and look forward to hearing about the conversations, connections, and ideas that emerge from the meeting!

Safe travels, Iván, and thank you for representing our CDG community in Leuven! 💚🌎

09/29/2026

💚 Meet Ethan, from the USA, one of our 2026 Emmett's Legacy Fund grant recipients! 🇺🇸

His family writes: "Thank you so much to Emmett's Legacy for buying the rocker chair for Ethan. Having a chair on wheels that he can comfortably sit in allows us to sit close right alongside him. 💚 Every CDG child who's been touched by Emmett's legacy carries a bit of his spirit, keeping his memory a blessing."

We couldn't have said it better. Every child helped by this fund carries a piece of Emmett with them. 💚

Created by the Nguyen family in Emmett's honor, this fund helps children with CDG worldwide get equipment insurance won't cover. Thank you, sweet Emmett. 💚🐘

Learn more under Resources at www.cdgcare.org

Address

PO Box 38832
Colorado Springs, CO
80937

Telephone

+18662957910

Website

http://linktr.ee/cdgcareorg

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