CDG CARE, PO Box 38832, Colorado Springs, CO (2026)

09/03/2026

Happy Birthday, September stars! 🌟
You shine as bright as the crisp autumn air 🍂
Wishing you warmth, laughter, and love
And a year full of blessings beyond compare. 💚

Also celebrating in September:
Heloísa, GPAA1-CDG 🇧🇷
Mela, PMM2-CDG 🇺🇸
Matthew, PMM2-CDG 🇺🇸
Ashtyn, PIGN-CDG 🇺🇸
ChikYin, GMPPA-CDG 🇭🇰
Margot, ALG13-CDG 🇬🇧
Kingsley, ALG3-CDG 🇺🇸
Sage, OGT-CDG 🇺🇸
Chloe, ALG13-CDG 🇺🇸
Eduardo, PMM2-CDG 🇧🇷
Julian, PIGT-CDG 🇵🇱
Thomas, DHDDS-CDG 🇬🇧
Nicholas, MAN1B1-CDG 🇺🇸
Arthur, PGAP3-CDG 🇬🇧
Lena, SLC35A2-CDG 🇵🇱
Roxanna, SLC35A2-CDG 🇺🇸
Carson, MPI-CDG 🇨🇦
Demarquette, PMM2-CDG 🇫🇷
Domenico, PIGA-CDG 🇮🇹
Joshua, PMM2-CDG 🇺🇸
Pihla, PMM2-CDG 🇫🇮
Tito, SSR4-CDG 🇧🇷
Maya, SLC35A2-CDG 🇨🇦
Tianyue, COG5-CDG 🇨🇳
Attali, PGAP2-CDG 🇫🇷
Nathaniel, SLC35A2-CDG 🇺🇸
Zachary, PMM2-CDG 🇨🇦
Catherine, PIGT-CDG 🇺🇸
Kerem, ALG8-CDG 🇹🇷
Khadija, Genetic type not provided 🇵🇰
Marco, PIGN-CDG 🇮🇹
Deshan, ALG1-CDG 🇺🇸
Maggie, PMM2-CDG 🇺🇸
Raynie, PIGT-CDG 🇺🇸
Cash, PMM2-CDG 🇺🇸
Lily, PMM2-CDG 🇺🇸
Salvador, PIGN-CDG 🇬🇧
Tucker, PGM1-CDG 🇺🇸
Kacper, PIGV-CDG 🇵🇱
Sofia, PMM2-CDG 🇧🇷
Tim, PMM2-CDG 🇺🇸
João, SSR3-CDG 🇧🇷
Maria, ALG9-CDG 🇨🇦
Sreedhar, COG7-CDG 🇮🇳
Victoria, SLC35A2-CDG 🇷🇺
Bruno, ALG14-CDG 🇪🇸
Gage, NGLY1 🇺🇸
Haylie, SLC35A2-CDG 🇺🇸
Valentina, SLC35A2-CDG 🇧🇷
Levi, PIGN-CDG 🇺🇸
Axle, MPDU1-CDG 🇺🇸
Tim, PMM2-CDG 🇩🇪
Gaja, PIGT-CDG 🇵🇱
Iris, SLC35A2-CDG 🇺🇸
Stéan, ALG6-CDG 🇳🇱
Ian, DPM1-CDG 🇲🇽

09/01/2026

💚 CDG families... we have two times to connect today and share what's on your mind.

Whether you have wins to share, worries to talk through, or you just want to sit with people who truly get it... there's a seat for you.

All CDG families welcome. 🌍
Today, September 1st @ 11AM & 7PM ET

🕚 11:00 AM ET - Register here: https://bit.ly/4geJkko
🕖 7:00 PM ET - Register here: https://bit.ly/4xN7pGp

08/15/2026

💚 CDG families, what's on your mind?

Bring it to our next CDG Community Connection. Whether you have wins to share, worries to talk through, or you just want to sit with people who truly get it... there's a seat for you.

All CDG families welcome. 🌍
Tuesday, September 1st @ 11AM & 7PM ET

🕚 11:00 AM ET - Register here: https://bit.ly/4geJkko
🕖 7:00 PM ET - Register here: https://bit.ly/4xN7pGp

08/14/2026

🚨 𝐍𝐄𝐖 𝐂𝐃𝐆 𝐑𝐄𝐒𝐄𝐀𝐑𝐂𝐇 𝐅𝐔𝐍𝐃𝐈𝐍𝐆 𝐎𝐏𝐏𝐎𝐑𝐓𝐔𝐍𝐈𝐓𝐘! 🧬

We did it, Team CDG - and now the next chapter begins. 💚

Following our incredible community effort at the 𝟮𝟬𝟮𝟲 𝗠𝗶𝗹𝗹𝗶𝗼𝗻 𝗗𝗼𝗹𝗹𝗮𝗿 𝗕𝗶𝗸𝗲 𝗥𝗶𝗱𝗲, 𝘄𝗲 𝗮𝗿𝗲 𝘁𝗵𝗿𝗶𝗹𝗹𝗲𝗱 𝘁𝗼 𝗮𝗻𝗻𝗼𝘂𝗻𝗰𝗲 𝘁𝗵𝗮𝘁 𝘁𝗵𝗲 𝟮𝟬𝟮𝟲 𝗠𝗗𝗕𝗥 𝗣𝗶𝗹𝗼𝘁 𝗚𝗿𝗮𝗻𝘁 𝗣𝗿𝗼𝗴𝗿𝗮𝗺 𝗶𝘀 𝗼𝗳𝗳𝗶𝗰𝗶𝗮𝗹𝗹𝘆 𝗼𝗽𝗲𝗻, 𝗶𝗻𝗰𝗹𝘂𝗱𝗶𝗻𝗴 𝗮 $𝟱𝟬,𝟬𝟬𝟬 𝗿𝗲𝘀𝗲𝗮𝗿𝗰𝗵 𝗳𝘂𝗻𝗱𝗶𝗻𝗴 𝗼𝗽𝗽𝗼𝗿𝘁𝘂𝗻𝗶𝘁𝘆 𝗱𝗲𝗱𝗶𝗰𝗮𝘁𝗲𝗱 𝘁𝗼 𝗖𝗼𝗻𝗴𝗲𝗻𝗶𝘁𝗮𝗹 𝗗𝗶𝘀𝗼𝗿𝗱𝗲𝗿𝘀 𝗼𝗳 𝗚𝗹𝘆𝗰𝗼𝘀𝘆𝗹𝗮𝘁𝗶𝗼𝗻 (𝗖𝗗𝗚)!

Earlier this summer, our families, riders, donors, and supporters came together and surpassed Team CDG's $50,000 fundraising goal.

Now those dollars are moving directly toward research.

Researchers are invited to submit a 𝗟𝗲𝘁𝘁𝗲𝗿 𝗼𝗳 𝗜𝗻𝘁𝗲𝗿𝗲𝘀𝘁 𝗳𝗼𝗿 𝗮 𝗼𝗻𝗲-𝘆𝗲𝗮𝗿, $𝟱𝟬,𝟬𝟬𝟬 𝗖𝗗𝗚 𝗿𝗲𝘀𝗲𝗮𝗿𝗰𝗵 𝗴𝗿𝗮𝗻𝘁, through a competitive process administered by the Orphan Disease Center.

We encourage researchers around the world to explore this opportunity - and askour entire CDG community to help us spread the word!

📅 𝗟𝗢𝗜 𝗗𝗲𝗮𝗱𝗹𝗶𝗻𝗲: 𝗙𝗿𝗶𝗱𝗮𝘆, 𝗦𝗲𝗽𝘁𝗲𝗺𝗯𝗲𝗿 𝟭𝟴𝘁𝗵, 𝟮𝟬𝟮𝟲 𝗯𝘆 𝟴𝗽𝗺 𝗘𝗧

𝙑𝙞𝙚𝙬 𝙩𝙝𝙚 𝙤𝙛𝙛𝙞𝙘𝙞𝙖𝙡 𝙤𝙥𝙥𝙤𝙧𝙩𝙪𝙣𝙞𝙩𝙮 𝙖𝙣𝙙 𝙖𝙥𝙥𝙡𝙮: https://bit.ly/4wqQmZy
𝙍𝙚𝙖𝙙 𝙩𝙝𝙚 𝙛𝙪𝙡𝙡 2026 𝙍𝙁𝘼: https://bit.ly/3TMOcWF

To every person who rode, walked, donated, shared, supported, and believed in this effort - you helped make this research opportunity possible. 🚲

From fundraising to research.
From community action to scientific progress.

𝐋𝐞𝐭'𝐬 𝐤𝐞𝐞𝐩 𝐦𝐨𝐯𝐢𝐧𝐠 𝐂𝐃𝐆 𝐫𝐞𝐬𝐞𝐚𝐫𝐜𝐡 𝐟𝐨𝐫𝐰𝐚𝐫𝐝. 💚

08/03/2026

⏰ TOMORROW!

CDG Community Connection is our safe, casual space for parents and caregivers to come together, and this month we're making sense of clinical trials. 🧬🔬

When trial news breaks, we all ask the same thing: did it work? But before a trial can answer that, researchers first have to agree on exactly what to measure, the specific signs that show a treatment is really helping our kids.

Join us for an informative conversation with Dr. Rose Marino, Chief Medical Officer of Glycomine, about understanding clinical trials, what it means to validate an endpoint, why it's so important in rare diseases like CDG, and how our voices as families help shape what research measures.

𝐖𝐡𝐨? All CDG families welcome! (Live translated captions available, so you can join in your preferred language.) 🌎
𝐖𝐡𝐞𝐧? Tomorrow - Tuesday, August 4 · 6:00 PM ET
𝐑𝐞𝐠𝐢𝐬𝐭𝐞𝐫 𝐡𝐞𝐫𝐞: https://bit.ly/4yZMfWW

08/02/2026

Happy Birthday, August stars! ✨🎈
You shine as bright as the last golden days of summer
Wishing you warmth, laughter, and love
And a year even brighter than the one before. 💚

Also celebrating in August...
Ella, PGAP3-CDG 🇳🇿
Victoria, PGAP3-CDG 🇳🇿
Addie, SLC35A2-CDG 🇺🇸
Katherina, PIGQ-CDG 🇧🇷
Kylo, ALG1-CDG 🇦🇺
Max, SLC35A2-CDG 🇦🇺
Allira, PMM2-CDG 🇦🇺
Bennett, PMM2-CDG 🇺🇸
Tucker, PMM2-CDG 🇺🇸
Daniel, ST3GAL5-CDG 🇺🇸
Nick, PMM2-CDG 🇳🇱
Jan, PIGT-CDG 🇵🇱
Elliot, PMM2-CDG 🇦🇺
Tran, ALG13-CDG 🇻🇳
Corbin, PIGA-CDG 🇺🇸
Matthew, ATP6V0A2-CDG 🇺🇸
Emily, ALG13-CDG 🇺🇸
Liam, PMM2-CDG 🇺🇸
Jenna, PMM2-CDG 🇺🇸
Anna, PIGT-CDG 🇵🇱
Lois, EDEM3-CDG 🇬🇧
Langston, PMM2-CDG 🇺🇸
D'chayro, PMM2-CDG 🇳🇱
Elisa, PIGK-CDG 🇧🇷
Kaylee, PMM2-CDG 🇺🇸
Yeva, PIGN-CDG 🇵🇱
Evelyn, PGAP3-CDG 🇺🇸
Max, CCDC115-CDG 🇺🇸
Hunter, PIGA-CDG 🇺🇸
Samantha, PMM2-CDG 🇺🇸
Bianca, PMM2-CDG 🇨🇦
Pacita, ALG13-CDG 🇺🇸
Zachary, OGT-CDG 🇺🇸
Amara, ALG1-CDG 🇺🇸
Ella, PMM2-CDG 🇬🇧
Michael, ALG12-CDG 🇺🇸
Lillian, PMM2-CDG 🇺🇸
Luka, ATP6AP2-CDG 🇺🇸
Emmett, PMM2-CDG 🇺🇸

07/28/2026

CDG Community Connection is our safe, casual space for parents and caregivers to come together, and this month we're making sense of clinical trials. 💻🩺🔬

When trial news breaks, we all ask the same thing: did it work? But before a trial can answer that, researchers first have to agree on exactly what to measure, the specific signs that show a treatment is really helping our kids.

Join us for an informative conversation with Rose Marino, Chief Medical Officer of Glycomine, about understanding clinical trials, what it means to validate an endpoint, why it's so important in rare diseases like CDG, and how our voices as families help shape what research measures.

𝐖𝐡𝐨? All CDG families welcome! (Live translated captions available, so you can join in your preferred language 🌎)
𝐖𝐡𝐞𝐧? Tuesday, August 4 · 6:00 PM ET
𝐑𝐞𝐠𝐢𝐬𝐭𝐞𝐫 𝐡𝐞𝐫𝐞: https://bit.ly/4yZMfWW

See you there! 💚

07/25/2026

Every family deserves answers. In recognition of Genetic Testing Action Day today, we’re sharing information about genetic testing so that families can make informed decisions.

If you’ve ever wondered whether genetic testing could help your family, visit StartGenetic.org to learn more and take the first step. 🧬💚

07/18/2026

Too many families face years of uncertainty about their child’s development and medical issues. Genetic testing could be the first step toward answers, community, and care.

Genetic Testing Action Day is an annual day of awareness observed on July 25th, led by Start Genetic® to help families access genetic testing and unlock the answers they deserve.

Visit StartGenetic.org to learn more. 🧬

07/06/2026

Join us tomorrow for our next 𝐂𝐃𝐆 𝐂𝐨𝐦𝐦𝐮𝐧𝐢𝐭𝐲 𝐂𝐨𝐧𝐧𝐞𝐜𝐭𝐢𝐨𝐧!

We hope everyone had a great holiday weekend! What a perfect time to reconnect and share your wins, woes, and everything in between.

We're back with our community-favorite open forum: "What's on your mind?" - a relaxed, judgment-free hour to talk about whatever's sitting on your heart. 🫸💚🫷

Care routines, therapies, school challenges, sleep (or the no-sleep nights), seizures, equipment, family balance… or just the heavy in-betweens nobody else quite understands.

Come to ask questions. Come to share what's working. Come to just listen with your camera off if that's the kind of day it is.

Who: All CDG families welcome (real-time translated captions available) 🌎
When: Tomorrow, July 7 @ 11AM & 7PM ET
Register here:
𝟏𝟏𝐀𝐌 𝐄𝐓 - https://bit.ly/4xDvRL2
𝟕𝐏𝐌 𝐄𝐓 - https://bit.ly/3Scz3Nq

We hope you'll join us. 💚

CDG CARE

09/03/2026

09/01/2026

08/15/2026

08/14/2026

08/03/2026

08/02/2026

07/28/2026

07/25/2026

07/18/2026

07/06/2026

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