CHARGE Accounts | July 2026

Welcome to The CHARGE Syndrome Foundation's newsletter! Each month, we'll detail the latest Foundation news and events, with links to our website to learn more.

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A Message from Our New Board President

Dear Friends,

I’m honored to introduce myself as the new President of the Board of the CHARGE Syndrome Foundation.

I’m Joanne Lent, from New Jersey. I joined the Board in 2013 when my son Eddie started at Perkins School for the Blind in Massachusetts and l was left with a lot of spare time. He’s now an adult, living in a group home that takes care of his significant support needs.

First, to the dedicated, hardworking parent volunteers who held this role before me, Thank you! Without your leadership and foresight, the Foundation would not be in the position to provide valuable information and assistance to so many families. I have some big shoes to fill.

To the CHARGE community, thank you for your generous donations, volunteer hours, and support of the Foundation over the years. You are the reason our work reaches families when it matters most and why we are able to make the CHARGE Syndrome conferences so amazing.

Speaking of Conference … Later this month, our team is heading to Dallas to start planning our 2027 Conference. We had a great time in Dallas in 2019 and can’t wait to return. Whether you’re a CHARGE “veteran” or a newly diagnosed family, I’m looking forward to seeing you in Dallas.

Save the Date:

17th International CHARGE Syndrome Conference

July 22-25, 2027, Dallas, TX

With the assistance of my fellow Board members, the Executive Director and staff, I promise to do my part to make the world a better place for individuals with CHARGE syndrome.

If you’d like to volunteer, share feedback, or have any questions, please reach out at joanne@chargesyndrome.org.

Make a Difference – Become a Conference Sponsor

Planning for the 17th International CHARGE Syndrome Conference in Dallas, TX is already underway! The CHARGE Syndrome Conference provides an outstanding opportunity for you to reach hundreds of professionals, families, and individuals with CHARGE syndrome. Increase your market outreach while supporting the only national organization dedicated solely to serving people affected by CHARGE syndrome.

This year we are introducing a new sponsorship opportunity just for families! For $1,000 you can make a difference in the lives of other families just like yours and have your family name featured on the Conference website, app, branded conference gear, and receive recognition at the podium.

Becoming a sponsor for our International CHARGE Syndrome Conference at any level comes with lots of great perks. Click below to learn about all the different levels of Sponsorship available in 2027 and about the benefits of becoming a Conference Sponsor.

For more information, email Conference@chargesyndrome.org.

Learn More

Deafblind Awareness Week

This year, we joined with Helen Keller Services as a partner organization in celebrating Deafblind Awareness Week June 25 – July 1. DeafBlind Awareness Week is an annual event that takes place during the last week of June, coinciding with the birthday of Helen Keller on June 27, 1880.

The purpose of DeafBlind Awareness Week is to raise public awareness about individuals who have combined hearing and vision loss, to promote a better understanding of the challenges they face, and to celebrate their unique abilities and contributions to society. This year’s theme was Connected by Touch: Breaking Barriers, Building Bridges.

At the CHARGE Syndrome Foundation, we used this week to help raise awareness for those in the CHARGE community that are living with deafblindness, including the unique challenges they face every day, by sharing your stories. Click below to read the stories of individuals with CHARGE living with deafblindness.

Deafblind Awareness Stories

CHARGE Syndrome Awareness Day

CHARGE Syndrome Awareness Day is August 8, 2026. This year’s theme is CHARGE syndrome - How do you spell it? You can show the incredible variability of CHARGE syndrome around the world by spelling out the letters C-H-A-R-G-E using items that reflect your life, culture, or country. Here are some examples:

Use anything meaningful or fun - pens, socks, toy cars, local foods, traditional crafts, or everyday objects from home
Use a landmark as your backdrop
Include your national flag
Show us something unique about the country where you live

Every photo becomes part of a global connection celebrating CHARGE families around the world.

Learn More

Support the Foundation with a Delicious Meal!

On August 7th, the day before CHARGE Syndrome Awareness Day, the CHARGE Syndrome Foundation will be hosting a fundraiser with Panda Express!

SAVE THE DATE and on August 7th, place your pick up or delivery order online for any Panda Express location at https://www.pandaexpress.com/ and input 9016034 into the Fundraiser Code box. That’s it! You enjoy a night off from cooking and the Foundation will receive 28% of the sale price.

Make a bigger impact! The Foundation will receive an additional 8% when you use a Panda Express gift card purchased through Raise Right.

Order Panda Express

Raise Right

Siblings in CHARGE

By: Sarah Perry Brighton

These are my three daughters. They are all college graduates. They all went to prom in high school. They all participated in extracurricular activities. They are each considered “essential workers.” Two have had serious medical health issues throughout their lives, and two are what the school system once deemed in need of special kinds of extra educational help – one because her IQ is very high.

One of them has CHARGE. Anna was born before CHARGE was even considered a true syndrome, and long before the gene was identified.

Did Anna’s birth ruin her sisters’ lives? You’d probably have to ask them (I have), but I know that I gave up the career I had outside the home to give most of my attention to trying to meet everyone else’s needs. It taxed us financially, and it taxed me in every way. I have found things to do part-time and at home throughout the years to help compensate.

Like many siblings of kids with medical issues, both of her sisters are in the medical field. Our eldest helps save lives every day. Our middle child provides empathy and kindness to those living with cancer. If they were led into these fields because of Anna’s birth, then there are also complete strangers who are alive and better off because of it.

Anna works. She is a very good, creative writer, she quilts, researches genealogy, and loves to walk and hike, and she has an amazing memory for detail. The people whose lives she touches find their day better.

I have found that each child is a special needs child. It is just a matter of trying to meet those needs and help them fly as high as they can with their own potential. And parenthood ain’t for the weak of heart!