CHARGE Accounts Newsletters
CHARGE Accounts is a monthly newsletter published by the CHARGE Syndrome Foundation primarily for individuals with CHARGE syndrome, parents/family of children with CHARGE syndrome, and medical and educational professionals working with individuals who have CHARGE syndrome. Click here to be added to our mailing list.
CHARGE Accounts Newsletter Submission Guidelines
Newsletters
February 2026
Register Now for Walk and Roll for CHARGE
Get ready to move for a cause at the 7th Annual Walk and Roll for CHARGE, April 25, 2026. Let’s make this the biggest year yet!
Register today and be a part of making a better world for people with CHARGE syndrome.
Click here to learn more about Walk and Roll for CHARGE.
Order Your Official Walk and Roll T-Shirt and Hoodie
T-shirts and hoodies are available for purchase at the time of registration or at the Walk and Roll for CHARGE store.
*Orders must be received by March 20, 2026 in order to be received by the event date, April 25, 2026. Delivery not guaranteed by event date when ordering outside of the US.
Get Recognized with Walk and Roll for CHARGE
- The first 50 team captains or individuals to reach the $1,000 mark will also receive a limited edition Walk and Roll for CHARGE Owala Water Bottle
- Raise $1,000 (or become a sponsor) and see your name on the back of the official Walk and Roll t-shirts*
Click here to learn how you can make the most of your fundraising efforts.
Click here to learn more about becoming a sponsor.
*$1,000 raised by March 20, 2026 for name to appear on back of t-shirt. Names will not appear on hoodies.
Ask the Expert: Behaviors, Communication, and Connection
When: February 12, 7:00 pm ET
What: Behaviors, Communication, and Connection
In this Ask the Expert webinar, we will explore how communication can serve as a powerful tool to shape behavior or, in certain cases, act as a trigger that intensifies it. We will also reflect on the significance of the role of adults as key actors in fostering positive change. Throughout the session, we will share real-life experiences, recognizing that mistakes are an inherent part of the learning process that connects us to a reality we all share. Learn more and register…
Feeding Tube Awareness Week
Feeding Tube Awareness Week takes place Feb 1-7, 2026, raising awareness about tube feeding, debunking myths, and removing stigma for the hundreds of thousands who rely on tubes for nutrition, showcasing them as life-saving tools for stability and independence. Read full article…
Rare Disease Day
The last day of February is World Rare Disease Day, an annual event that gives us the chance to come together, show our stripes, and raise awareness for more than 300 million people affected by rare disease globally. This year the theme is, “More Than You Can Imagine.” Read full article…
Parent Re-CHARGE Hour Returns
The Parent Re-CHARGE Hour virtual support group is returning with modified dates and times. This group is open to any parent or caregiver of someone with CHARGE syndrome. We will share stories, support each other, lift each other and re-CHARGE! We will also include guest speakers on select topics of interest. Read full article…
Adults with CHARGE Corner
My name is Rafael Garrigos. I’m 38 and live in the Chicago area. I learned at an early age how to move through a world that often felt out of rhythm with my senses. Vision along with hearing challenges shaped my days, yet they also taught me to slow down, notice small details, as well as trust steady work. Those lessons shaped my writing long before I knew I would call myself a writer. Read full article…
December 2025
President’s Year-End Message
I would like to personally wish our entire CHARGE community a happy and healthy New Year! 2025 was a banner year! Everyone knows we had a great conference, but did you know that the Foundation, the Emma Bluestone Scholarship, the Claire Marie Springer Scholarship, and CHARGE for Connor supported 84 attendees with scholarships to cover registration fees and 54 families with scholarships to cover hotel fees? The Foundation also paid the registration fees for 229 individuals with CHARGE. Read full article…
Together We Have Reached New Heights
It has been a landmark year for the CHARGE Syndrome Foundation. In fact, we broke all-time Foundation records in conference scholarships and program awards this year, reaching more families than ever before and expanding our impact in ways we are incredibly proud of. Read the full article…
Giving Tuesday and Year-End Giving
Thanks to your generosity, we raised over $10,000 on Giving Tuesday. We are so grateful for the support of our CHARGE community!
Missed out on Giving Tuesday? It’s not too late to make the Foundation a part of your year-end giving! Donate now and help us CHARGE On! to make the world a better place for people with CHARGE syndrome!
See how your contribution can make a difference…
Lead the Way – Apply to Join Our Board Today!
Are you ready to help shape the future of the CHARGE community? We are now accepting applications for new Board positions from Foundation members who are passionate about making a real impact. Learn more…
New for the New Year – Adults with CHARGE Corner
We are exciting to start planning a new section of the monthly CHARGE Accounts newsletter highlighting the lives of Adults with CHARGE. We want to hear from you! Click here to submit a 1-3 paragraph article telling us about your life, challenges you have faced, accomplishments of which you are proud, or anything you would like to share.
In addition to articles by you, we are also interested in learning about topics you would like to learn more about for future articles, social media posts, or webinars by experts in the field. Please submit those ideas here.
Reflections From a Davenport Fellow
by: Luca Bottitta
Coming to the 2025 International CHARGE Syndrome Conference, I was filled with excitement and passion that had built up over the past two years. I felt honored to be named a Sandra Davenport Fellow for a second time and was invigorated by the opportunities this fellowship would bring to me once again. Read the full article…
November 2025
Help Lead the Way – Apply to Join the Board
We are seeking members of the Foundation who have the passion and the skills to help advance our mission by serving on our Board of Directors. Read full article…
Meet the New Family Liaisons
We are pleased to welcome several new Family Liaisons to the Foundation. Family Liaisons help to improve the Foundation’s outreach to both families and professionals at the national level. Read full article…
Navigating CHARGE Syndrome as a Military Family
Raising a child with CHARGE syndrome brings unique challenges, joys, and triumphs — and for military families, those experiences often come with added layers of complexity. Read full article…
CHARGE On! – Giving Tuesday
Every year since its inception, Giving Tuesday has brought people together to support the causes that they care most about. This year, we hope that you will support the CHARGE Syndrome Foundation and our CHARGE On! campaign. Read full article…
New Research Opportunity: Exploring Pain in CHARGE
The Mississippi State Bulldog CHARGE Syndrome Research Lab is currently conducting a research study exploring pain in CHARGE syndrome. Specifically, this study aims to examine pain experiences in individuals with CHARGE throughout their lifespan. While previous research on pain has been examined in various populations of individuals with disabilities, there is little research involving those with CHARGE and no research including adults with CHARGE. Read more about this and all current research opportunities for families…
Medical Travel Tips
Traveling with an individual with complex medical needs can be complicated. There are many additional items you may need to bring along, such as trach supplies, mobility assistance equipment, or even a service animal. Navigating the airport and plane with these items can be especially tricky. We can help. Read full article…
Help us name our 17th International CHARGE Syndrome Conference
YOU could be the one to come up with the theme for the next conference! Read full article…
October 2025
Articles Include:
- Celebrating Our Incredible Volunteers
- New Charge it for CHARGE Campaign Begins!
- Research Grant Cycle Opens
- The Importance of Community
- Reflections from a Sandra Davenport Fellow
- Research Opportunities for Families
- Upcoming Events
September 2025
Articles Include:
- The Rise of the Phoenix at Conference
- Reflections on Conference
- Volunteering with the Foundation
- Always in Our Hearts – A Day to Remember
- Millie’s Medical Travel Journey
- Upcoming Events
August 2025
Articles Include:
- 16th International CHARGE Syndrome Conference
- CHARGE Family Sports and Recreation Workshop
- 17th International CHARGE Syndrome Conference
- Thank You Conference Sponsors
- 2nd International CHARGE Syndrome Awareness Day
- Ask the Expert: Creative Café:Person-Centered Scrapbook-Making
- Music Therapy for Sophia
- Upcoming Events
June 2025
Articles Include:
- Growing Up at Conference – A Sibling’s Perspective
- 6th Annual Walk and Roll for CHARGE
- Logan Marty BBQ Fundraiser
- International CHARGE Syndrome Awareness Day
- New Bikes for Christian and Logan
- Be a Part of the First Ever CHARGE Art Show!
- Why Art?
- Pre-Order Your Conference Merchandise!
- Conference Sessions Agenda Now Available
- Conference Family Checklist
- Upcoming Events
May 2025
Articles Include:
- The 6th Annual Walk and Roll for CHARGE is May 17th
- CHARGEon4Tucker’s Bowling Fundraiser
- Ask the Expert – Preparing for School Break
- Webinar: Thoughts on Behavior in CHARGE
- Be Paired with Davenport Fellows at Conference
- Important Conference Reminders
- Conference Family Checklist
- Upcoming Events
April 2025
Articles Include:
- Make a Difference – Volunteer at Conference
- What to Expect at Conference
- CHARGE Award Nominations
- Limited Edition Conference Merchandise
- Walk and Roll in Every State – We’re Halfway There!
- Conference Family Checklist
- Upcoming Events
March 2025
Articles Include:
- Conference Registration is Now Open!
- The Conference Experience
- First-Ever CHARGE Syndrome Conference Art Show
- Sibling and Adults with CHARGE Panelists
- New Family Liaisons
- 6th Annual Walk and Roll for CHARGE
- Crocker Barker CHARGE Sibling Scholarship
- Conference Family Checklist
- Upcoming Events
February 2025
Articles Include:
- 6th Annual Walk and Roll for CHARGE
- Share Your Story for Rare Disease Day
- New Parent-to-Parent Support Meetings
- Conference Sponsorships Available
- We Need Your Help! (Auction Items for Conference)
- Call for Conference Panelists
- Conference Family Checklist
- Upcoming Events
January 2025
Articles Include:
- Looking Forward to 2025
- Volunteer at Conference
- Become a Conference Sponsor
- Research Opportunities at Conference
- Sandra Davenport Fellowship
- New Vice President of the Board –Penni Echols
- Sweets for CHARGE
- Upcoming Events
For newsletters from 2004-2025, please email [email protected]
