SabrinaRES

Welcome!

Sabrina Schoenberg RES Foundation

Sabrina

A note from

For years I have wanted to start a foundation to help other children with RES (and related disorder GLHS) to live their best lives despite their disability. Whether it’s for expensive therapies or extracurricular activities like dance, theater programs, gymnastics, etc., I want to use the money raised by my Foundation to help families make their RES child’s life better. I also want kids with RES to know that they are not alone or weird or unlovable. We may have different needs than other kids, we may not always feel heard or understood, but we deserve to live our lives happily and without judgment.

Simple Human Body Parts Illustration - Brain

The Sabrina Schoenberg RES Foundation provides scholarships to children with RES so they can better afford doctors, therapies, dance classes, or other activities to help improve their lives.

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Dream it, Do It

Mission

Our

Sabrina Schoenberg res foundation

Our mission is:

(1) to inspire individuals with Rhombencephalosynapsis and Gomez Lopez Hernandez Syndrome to go beyond the limits that have been set for them, and (2) to give scholarships to children and adults with these disorders so they can get the therapies and afford activities that will improve their lives.

How will we accomplish our mission?

#01

Work with medical professionals to raise awareness of the condition.

#02

Raise money to provide grants to individuals who need financial assistance so they can afford the therapy and activities that can help them thrive

#03

Raise awareness through social media about RES and GLHS and the impact silent disabilities have on the individuals who live with them

Dancing is my passion. Dance Improves Motor, Cognitive, and Social Skills in Children With Developmental Cerebellar Anomalies. (ResearchGate, April 2022, The Cerebellum)

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what is

rhombencephalosynapsis?

(RES - for short)

(RES) is a unique cerebellar malformation characterized by fusion of the cerebellar hemispheres with partial or complete absence of a recognizable cerebellar vermis.

what is

Gomez Lopez Hernandez syndrome?

(GLHS - for short)

GLHS is a rare condition characterized by partial scalp baldness (alopecia); numbness of the face, eyes, sinuses, and mouth (trigeminal anesthesia); and a brain abnormality called rhombencephalosynapsis.

A little More About

Res & glhs

What is RES/GLHS?

RES and GLHS are part of a group of conditions broadly called "hindbrain malformations." Because these conditions are extremely rare, they aren't well understood. RES/GLHS shows up in a lot of different ways. Here are some common characteristics people with this diagnosis might experience.

Balance & Coordination

Nearly everyone with RES/GLHS has challenges with balance and coordination. They might fall and get injured more than their same-age peers. Even walking a straight line can be a challenge.

Vision

A lot of people with RES/GLHS also have vision deficits. They might require glasses or eye surgery to keep their eyes aligned. In some cases, even with glasses, they do not have 20/20 vision.

Head Movement

Many people with RES/GLHS make shaking, rolling, or twitching movements with their heads. These movements are involuntary and the person often doesn't know they're happening unless others point it out.

Temperature Control

Some people with RES/GLHS struggle to maintain a steady body temperature. They might have a hard time warming up after getting cold or going swimming, even on a hot day. Or they might “run hot,” including having unexplained fevers, with no other symptoms of illness.

Sensory Input

Many people with RES/GLHS have atypical sensory needs. They might have a high pain tolerance or crave a lot of input, bumping into people and objects around them without noticing. Or they might be very sensitive to input, avoiding strong smells, loud noises, or itchy clothing.

How can I help?

Be patient. Because the hindbrain controls so many essential functions--behavior and temperature regulation, hunger, balance and coordination--people with RES/GLHS are constantly building new pathways in their brains to figure out how to do things that come easily to others, like walking and swallowing. If you're providing support to someone with RES/GLHS, be patient and keep trying different things.

Other features that have been associated with RES include

(but are not limited to):

Parietal/temporal alopecia and/or globally thin hair.

Brain sick body organ character sad vector cranium

Other brain malformations

such as hydrocephalus, aqueductal stenosis, and ventriculomegaly

disease Vision related Blurred macular Pinkeye eye Exam retina atrophic Amblyopia Strabismus Eyestrain Red Lazy Cross Nystagmus Colorblindness Uveitis pain Dry Loss Age

Eye abnormalities

(including strabismus &nystagmus)

Seizures

Abnormal Brain Activity

emg and ncv nerve autism brain conduction study EEG floor stress Post Traumatic PTSD anxiety ADHD TMS Transcranial Magnetic Stimulation

Hyperactivity and other behavioral disorders

Developmental delay and/or intellectual impairment

eyebrow facial eye fasciculation potassium insomnia deficiency brain neuropathy Hemifacial nerve trigeminal neuralgia eyelid blepharospasm lip twitching stroke bell's palsy mouth face muscle spasm

Trigeminal anesthesia

(facial and eye numbness)

Lined Dopamine Brights Isometric Surrealist Human Head

Craniofacial Dysmorphology

Including midface hypoplasia, hypertelorism, high forehead, low posteriorly-rotated ears, and cleft lip/palate.

Parietal/temporal alopecia and/or globally thin hair.

Poor suck/swallow reflex, failure to thrive.

Circular 3D Head - Young Baseball Player

Head rolling/rocking

Bi level surgery ICU Intensive Care Unit oxygen nasal sinus snoring COPD Chronic pulmonary disease

Sleep apnea

Small size

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abrina

About

Born and raised in Chicago, Illinois, Sabrina is an actress, national champion ballroom dancer, and the founder of the Sabrina Schoenberg RES Foundation. Sabrina was one of the first living people in the United States to be diagnosed with RES and GLHS. Sabrina graduated from Columbia College Chicago with a bachelor's degree in acting. Sabrina travels around the world as a competitive ballroom dancer. She has defied several odds, training with some of the top coaches and professionals in the ballroom dance industry, and has become a national and regional ballroom dance champion. When she is not acting, ballroom dancing, and training for the adaptive CrossFit games, she teaches children in the arts. Since Sabrina was a child, it has been her goal to start a foundation to make people more aware of RES, GLHS, and similar silent disabilities. “I want to tell my story and inspire others to go beyond the self-imposed, medically-imposed, or socially-imposed limits that have been set for them. I want others to know that even if the odds are not in your favor and people doubt your ability to do something, you can do whatever you put your mind to and accomplish your dreams.” In May of 2023, Sabrina used her college graduation money to start the Sabrina Schoenberg RES Foundation. Click Here to learn more about Sabrina!

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A Note For Teachers

Not only do we hope to provide scholarships to families we hope to educate teachers and coaches on how to teach someone who has a disability. There is more than one way to teach.

Learning from Andre has been life-changing for me. He doesn’t treat me like I have a disability. He has taken the time to learn how to teach specifically for me and my brain. If one thing doesn’t work, he will try something else. We have a lot of physical and audible cues since I can’t see well. I wear fishnets for every dance lesson and competition to help me feel my legs and we use chairs to help with my spacial awareness.

Andre plays to my strengths but also works to strengthen my weaknesses rather than avoid them.

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A Note From

Andre Santore

Working with Sabrina I have found that teaching her about different muscle groups and using different parts of her body helps bypass some of her balance issues. It helps with her coordination and overall self-awareness. Constant repetition and use of keywords helps keep things consistent for her. Focus on muscle memory is crucial, especially when she can’t feel her limbs. It has been the key to overcoming her physical obstacles.

In my time as a teacher I have learned that understanding each person is very important. The more you know about your student and their limitations, the easier it is to help them achieve their dreams. I firmly believe that anyone can learn to dance. There isn’t just one way of teaching a student. Don’t treat them differently, teach them differently. Nothing is impossible with a little patience, creativity, and understanding.

-Andre Santore

Sabrina’s Mentor & Dance Instructor