Help Stephanie Woods Attend CHARGE Conference
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My name is Stephanie Woods, a 39-year-old woman with CHARGE Syndrome living in Cincinnati, Ohio. I need funds to attend the CHARGE Syndrome Biennial Conference to be held in Phoenix, AZ, July 24-July 27, 2025, and I’d love to have your help!
I was born with CHARGE Syndrome, a complex genetic syndrome that occurs in 1 in 10,000 births. It causes extensive medical and physical difficulties such as hearing and vision loss that differ from person to person, requiring medical and therapeutic intervention throughout a person’s life. Most of us have similar facial features. It’s so unusual that it wasn’t identified as a syndrome until 1979, and most doctors didn’t know about it until 1989, when I was three. I could tell you more, but I don't want to bore you to death!
Because CHARGE is so rare, I seldom have the opportunity to meet people with similar experiences who also look like me. The Biennial Conference will be a great opportunity to make social connections and gather information that can help me in many facets of my life. I need your help to make the trip possible.
About the Conference
The CHARGE Syndrome Biennial Conference will be held at the JW Marriott® Phoenix Desert Ridge Resort & Spa, in Phoenix, AZ, July 24-27, 2025. Registration is free for me, but I need an aide to go with me, and her fee is $399 for the 4-day event, including all meals.
My aide and I will share a room at the Marriott Courtyard Phoenix for 3 nights, 7/23/25-7/25/25.
• The room cost is $192 per night for 3 nights, totaling $576.
• Round trip airfare is $406 per person, for a total of $812.
• Snacks and sundries - $112
• The grand total for the trip is $1,500.
I would appreciate any amount you can give!
More about me
I was born with low vision (almost legally blind), impaired hearing, and poor motor skills. At 3 months of age, I had the first of many surgeries, and I got my first hearing aids when I was one year old. I started intensive physical, occupational, and speech therapy as a baby, and I still need physical therapy for various issues. I wear two hearing aids and glasses, use large print, and need a white cane wherever I go.
Despite all these challenges, I attended mainstream classes in school (with the assistance of an aide) and took a college prep curriculum, graduating from high school with a B average.
I live independently with the assistance of caregivers who come most days to assist me with cooking and household chores and drive me to appointments and outings. I take classes in the community, work out a couple of times a week, write short stories, and keep up with friends on social media.
To see more faces of CHARGE Syndrome, check out these other personal stories:
Organizer
Ginny Woods
Organizer
Fairfield, OH