CDG CARE

06/04/2026

🎬✨ Episode EIGHT is now LIVE! 💚

This week in the CDG CARE 2026 Education & Research Miniseries, we are excited to feature Dr. Clement Chow from the University of Utah as he presents:

🧬 "Flying to the Clinic: Common Struggles, Biology, and Solutions"

What do fruit flies have to do with developing treatments for CDG?

More than you might think.

In this fascinating session, Dr. Chow shares how fruit fly models are helping researchers better understand CDG biology, uncover disease mechanisms, and identify potential therapeutic opportunities through innovative drug repurposing strategies.

Whether you're a family member, clinician, researcher, or simply curious about how discoveries move from the laboratory toward patient care, this is a session you won't want to miss.

📺 Watch Episode EIGHT here: https://youtu.be/_w5vnmLdnqg

Follow the CDG CARE page and subscribe to our YouTube Channel to be notified when new episodes are released each week!

2026 CDG Miniseries | Episode EIGHTFrom the 2026 CDG Scientific &...

06/03/2026

🚴💚 𝐓𝐄𝐀𝐌 𝐂𝐃𝐆 𝐑𝐄𝐒𝐄𝐀𝐑𝐂𝐇 𝐂𝐇𝐀𝐋𝐋𝐄𝐍𝐆𝐄 💚🚴

We are SO close... And we need YOU!!!

Team CDG has raised $33,400 toward our $50,000 Million Dollar Bike Ride goal. That means just $𝟏𝟔,𝟔𝟎𝟎 𝐥𝐞𝐟𝐭 𝐭𝐨 𝐫𝐚𝐢𝐬𝐞 𝐛𝐲 𝐉𝐮𝐧𝐞 𝟑𝟎𝐭𝐡!

𝐇𝐞𝐫𝐞'𝐬 𝐰𝐡𝐲 𝐢𝐭 𝐦𝐚𝐭𝐭𝐞𝐫𝐬:
🎯 Reaching $50,000 makes Team CDG eligible to participate in the University of Pennsylvania Orphan Disease Center's MDBR Grant Program, creating an opportunity to fund NEW CDG research through a competitive grant process.

📈 We're already 66% of the way there. Every single donation pushes us closer to the next breakthrough for the global CDG community.

📅 𝐈𝐌𝐏𝐎𝐑𝐓𝐀𝐍𝐓 𝐌𝐃𝐁𝐑 𝐑𝐄𝐌𝐈𝐍𝐃𝐄𝐑𝐒:
✅ Volunteer registration closes June 7th — all onsite volunteers must be registered by this date
✅ Volunteer assignments go out by the end of this week
✅ June 13th ride-day logistics & details shared this week
✅ Final fundraising deadline: June 30th

Team members — watch for additional communications on packet pickup, volunteer assignments, and event-day info!

Together, we've funded research, advanced therapies, and created hope for families around the world. Let's do it again. 💚

💚 Help us close the gap.
💚 Share this post.
💚 Invite a friend to support Team CDG.
💚 Let's unlock the next CDG research opportunity!

👉 DONATE TODAY: https://charity.pledgeit.org/t/r05x7jgekb

The Million Dollar Bike Ride for Orphan Disease Research

06/02/2026

🎬✨ Episode SEVEN is now LIVE in the 2026 CDG Education & Research Miniseries! 💚

This week, we are honored to feature Dr. Eva Morava, Professor of Genetics and Genomic Sciences at the Icahn School of Medicine at Mount Sinai and one of the world's leading experts in Congenital Disorders of Glycosylation (CDG), as she presents:

🧬 “Clinical Trials and Therapeutic Advances in CDG: Lessons Learned and Future Directions”

As research continues to accelerate across the CDG landscape, families and clinicians alike are asking an important question: Where do we go from here?

In this insightful session, Dr. Morava reviews lessons learned from clinical trials and therapeutic development efforts to date while exploring future directions that may shape the next generation of treatments and care for individuals living with CDG.

Whether you are a family member, clinician, researcher, or advocate, this is a must-watch session that highlights both the progress achieved and the opportunities that lie ahead.

📺 Episode SEVEN is now LIVE! Watch here: https://youtu.be/pwqC_ezTdYU

💚 Be sure to LIKE & FOLLOW the CDG CARE page and subscribe to our YouTube Channel so you never miss new episodes released every week!

2026 CDG Miniseries | Episode SEVENFrom the 2026 CDG Scientific &...

06/01/2026

💚🌎 11 🅈🄴🄰🅁🅂 🅂🅃🅁🄾🄽🄶! 🌍💚

As we wrap up our 𝟏𝟏𝐭𝐡 𝐀𝐧𝐧𝐮𝐚𝐥 𝐖𝐨𝐫𝐥𝐝 𝐂𝐃𝐆 𝐀𝐰𝐚𝐫𝐞𝐧𝐞𝐬𝐬 𝐃𝐚𝐲, we’re still riding the wave of love, light, and GREEN that you brought to this global campaign. From classmates and coworkers to extended family and neighbors, you showed up in a BIG way for our CDG heroes, and we saw every bit of it. 💫

💚 Look what 𝐖𝐄 did. 💚

Our 2026 World CDG Awareness Day campaign reached 𝟑𝟖,𝟎𝟎𝟎+ people and racked up over 𝟏𝟕𝟖,𝟎𝟎𝟎 views across Facebook... every bit of it organic, powered entirely by this community. 🌍

Together you gave us 𝟒,𝟎𝟎𝟎+ reactions, comments, and shares, and helped us light up 𝟐𝟐 states with official World CDG Day proclamations on May 16th.

This is what 𝐒𝐭𝐫𝐨𝐧𝐠𝐞𝐫 𝐓𝐨𝐠𝐞𝐭𝐡𝐞𝐫 looks like. Thank you for making it happen. 💚

🎥 Don’t miss the 𝟮𝟬𝟮𝟔 𝗖𝗗𝗚 𝗔𝘄𝗮𝗿𝗲𝗻𝗲𝘀𝘀 𝗛𝗶𝗴𝗵𝗹𝗶𝗴𝗵𝘁 𝗩𝗶𝗱𝗲𝗼 we created to honor the smiles, the stories, and all the GREEN that helped tell the world that CDG families are not alone.

Let’s keep this momentum going as we continue to raise awareness, fund research, and support CDG families everywhere. 💚

https://youtu.be/kJralrBxyLE?si=j7xbU3RTNf3RNp1b

On May 16, 2026, communities around the world came together to reco...

05/30/2026

🎬✨ Episode SIX is now LIVE in the 2026 CDG Education & Research Miniseries! 💚

Today, we are honored to feature Dr. Christina Lam, Associate Professor of Pediatrics at the University of Washington and Medical Director of Biochemical Genetics at Seattle Children’s Hospital, as she presents:

🧬 “Building Clinical Trial Readiness in CDG: Lessons from Natural History Studies”

How do we prepare for successful clinical trials in CDG? In this important educational session, Dr. Lam discusses how natural history studies are helping build clinical trial readiness in CDG, providing valuable insights into research preparation, patient outcomes, and the future of therapeutic development.

This session is especially valuable for families and clinicians interested in the future of CDG research and treatment development.

📺 Episode SIX is now LIVE! Watch here: https://youtu.be/tqp4k8hlrXQ?si=V9ZNk1atMk5kIsmG

💚 Be sure to LIKE & FOLLOW the CDG CARE page and subscribe to our YouTube Channel so you never miss new episodes released every week!

2026 CDG Miniseries | Episode SIXFrom the 2026 CDG Scientific & F...

05/28/2026

📌 𝐂𝐃𝐆 𝐂𝐨𝐦𝐦𝐮𝐧𝐢𝐭𝐲 𝐂𝐨𝐧𝐧𝐞𝐜𝐭𝐢𝐨𝐧 | 𝐓𝐮𝐞𝐬𝐝𝐚𝐲, 𝐉𝐮𝐧𝐞 𝟐 𝐚𝐭 𝟕:𝟎𝟎 𝐏𝐌 𝐄𝐓
"𝘕𝘢𝘷𝘪𝘨𝘢𝘵𝘪𝘯𝘨 𝘵𝘩𝘦 𝘚𝘵𝘳𝘦𝘴𝘴 𝘛𝘩𝘢𝘵 𝘊𝘰𝘮𝘦𝘴 𝘞𝘪𝘵𝘩 𝘗𝘦𝘥𝘪𝘢𝘵𝘳𝘪𝘤 𝘔𝘦𝘥𝘪𝘤𝘢𝘭 𝘊𝘰𝘮𝘱𝘭𝘦𝘹𝘪𝘵𝘺: 𝘙𝘦𝘴𝘦𝘢𝘳𝘤𝘩 𝘢𝘯𝘥 𝘙𝘦𝘴𝘰𝘶𝘳𝘤𝘦𝘴"

If you're a CDG parent or caregiver, you already know... the medical appointments, the unknowns, the long hospital days, the worry that doesn't really turn off. It's a lot. And it's the kind of "a lot" that's hard to put into words for anyone who hasn't lived it.

That's exactly what our next CDG Community Connection is about.

We're so glad to welcome Jennifer Andrashko, MSW, LICSW, Clinical Lead at Alongside Network, for a conversation built specifically for our families.

Jennifer brings 20+ years of experience as a public health social worker, but just as importantly, she brings lived experience as a parent who has navigated hospital-based care with her own child. And she's spent her career turning that understanding into real, practical tools for caregivers like us.

𝐈𝐧 𝐭𝐡𝐢𝐬 𝐬𝐞𝐬𝐬𝐢𝐨𝐧, 𝐲𝐨𝐮'𝐥𝐥 𝐠𝐞𝐭:
💚 A clearer picture of what research says about caregiver stress in medically complex families
💚 Concrete coping strategies you can actually use
💚 An introduction to Alongside Network's free 6-week Wellbeing Group for parents and caregivers
💚 Space to connect with other CDG families who get it

This is a safe, judgment-free space. Come with your camera on, your camera off, in your pajamas, or while you're folding laundry, however you can show up is enough.

𝐑𝐞𝐠𝐢𝐬𝐭𝐞𝐫 𝐡𝐞𝐫𝐞: https://bit.ly/4fcXfc3

Alongside Network

05/28/2026

🎬✨ Episode FIVE is now LIVE in the 2026 CDG Education & Research Miniseries! 💚

This week, we are excited to feature Dr. Andrew Edmondson, Assistant Professor of Human Genetics and Metabolism at Children’s Hospital of Philadelphia, as he presents:

🧪 “From Bench to Bedside: Translating CDG Research into Future Clinical Trials”

How does promising CDG research move from the laboratory into meaningful treatments for patients? In this important session, Dr. Edmondson shares insights into the path toward future clinical trials, therapeutic development, and what it takes to bring scientific discoveries closer to the CDG community.

This is a must-watch session for families eager to better understand the future of CDG treatments and clinical research.

📺 Episode FIVE is now LIVE! Watch here: https://youtu.be/1pMW8LkEWXg?si=rJXnJgIw62ihW85_

💚 Be sure to LIKE & FOLLOW the CDG CARE page and subscribe to our YouTube Channel so you never miss new episodes released every week!

2026 CDG Miniseries | Episode FIVEFrom the 2026 CDG Scientific & Family Conference, Dr. Andrew Edmondson, Assistant Professor of Human Genetics and Metabolis...

05/26/2026

🚨 We Need Your Voice to Help Shape the Future of CDG Research! 🚨

For too long, rare disease research has been shaped without enough input from the families actually living it. We're changing that.

CDG CARE has officially launched the 𝐏𝐚𝐭𝐢𝐞𝐧𝐭 𝐏𝐫𝐢𝐨𝐫𝐢𝐭𝐢𝐳𝐞𝐝 𝐑𝐞𝐬𝐞𝐚𝐫𝐜𝐡 𝐀𝐠𝐞𝐧𝐝𝐚 (𝐏𝐏𝐑𝐀) 𝐒𝐮𝐫𝐯𝐞𝐲 — and YOUR answers will directly shape the future of CDG research.

The priorities identified through this survey will help guide the collaborative efforts we advance with clinicians, researchers, industry partners, and the newly launched Global CDG Clinical & Research Network (CDG-CRN) - ensuring that future research remains grounded in what matters most to the people living with CDG every day.

𝐖𝐡𝐲 𝐏𝐚𝐫𝐭𝐢𝐜𝐢𝐩𝐚𝐭𝐞?
💚 Your voice helps us better understand:
💚 The biggest daily challenges facing CDG families
💚 What symptoms and quality of life concerns matter most
💚 What research questions families most want answered
💚 Where clinicians, researchers, and families should focus efforts together

Whether you're newly diagnosed or have been in this community for years — your perspective matters.

🎯 Our goal: 𝟏𝟎𝟎 𝐫𝐞𝐬𝐩𝐨𝐧𝐬𝐞𝐬 𝐛𝐲 𝐉𝐮𝐧𝐞 𝟕𝐭𝐡. We can't get there without you.

Please take a few minutes to complete the anonymous survey and make sure your family’s voice is counted.

📝 Take the survey here: https://form.jotform.com/260843037084052

Together, we're building a research agenda shaped with families, for families. 💚

05/26/2026

🎬Episode FOUR is now LIVE in the 2026 CDG Education & Research Miniseries! 💚

This week, we are honored to feature Dr. Hudson Freeze, Director of the Human Genetics Program and Sanford Children’s Health Research Center, as he presents:

🧬 “The Expanded and Enriched CDG Ecosystem”

In this exciting and forward-looking session, Dr. Freeze explores the rapidly evolving CDG ecosystem, highlighting scientific discoveries, research progress, collaboration, and opportunities that continue to shape the future of CDG diagnosis, care, and therapeutic development.

Whether you are a family member, clinician, researcher, or advocate, this is an inspiring session you won’t want to miss!

📺 Episode FOUR is now LIVE! Watch it here: https://youtu.be/umJom38-De8?si=_GSACBBPfmMFfTyu

💚 Be sure to LIKE & FOLLOW the CDG CARE page and subscribe to our YouTube Channel so you never miss new episodes released every week!

2026 CDG Miniseries | Episode FOURFrom the 2026 CDG Scientific & ...

05/25/2026

Today we pause to remember and honor the brave men and women who gave everything so we could live in freedom. 🇺🇸