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CHARGE-Accounts-Spring-2018.Pdf SPRING 2018 vol 28 issue 2 id CHARGE Accounts The mission of the CHARGE Syndrome Foundation is to lead and partner to improve the lives of people with CHARGE syndrome locally, nationally and internationally through outreach, education, and research. OFFICERS President’s Message President: David Wolfe am honored to start my 4th term as the President of this amazing Vice-President: Amrit Mehta organization. I continue to be impressed by the accomplishments Treasurer: Brownie Shott of our CHARGE families and individuals with CHARGE. This issue Secretary: Joanne Lent I of CHARGE Accounts highlights the CAN DO spirit of a couple of DIRECTORS young individuals with CHARGE: Gannon and Sullivan. We also recognize our family members, Pamela Ryan, Cathy Lyle and Robert Last, Julie Brandrup who all recently won awards for their tireless dedication to the Karin Dagley deafblind community. Minnie Lambert Christian Lobaugh While I lurk on Facebook and celebrate the many accomplishments of Pamela Ryan Neal Stanger our families, I recognize that there is still much work to be done. Too Deanna Steinhauser often I am greeted with news of illness, hard times, and even death. This has been a very tough start to the year for some of our families. As a SPECIAL ADVISORS Foundation, we will continue to dedicate resources to increased scientific and clinical research. New grant recipients will be announced Megan Cote Tim Hartshorne this fall. We are also formally monitoring social media to determine what Meg Hefner information our families need. We will strive to provide more answers Donna Martin for our families in these CHARGE Accounts and on our website. Our Director of Outreach is available for advice or to assist you in DIRECTOR OF OUTREACH connecting with other organizations. There is much to do, but we are up Sheri Stanger for the challenge. DIRECTOR OF Before you read the newsletter, I need to take a moment to thank a few ADMINISTRATION dear friends. After 10 very productive years on the Board, Lisa Weir Jody Wolfe decided not to run for another term. She continues to be very involved with the Foundation and will always be a large part of our CHARGE DEVELOPMENT & family. Neal Stanger, who has held almost every position on the Board DATABASE MANAGER has stepped off the Executive Committee, but will remain an active Jackie Alshawabkeh member of our Board. I remain surrounded and supported by a dedicated team of volunteers. Brownie Shott enters her 11th term on The CHARGE Syndrome the Executive Committee. Brownie and I are privileged to welcome Foundation, Inc. 318 Half Day Road #305 Amrit Mehta and Joanne Lent to the Executive Committee. Please check Buffalo Grove, IL 60089 out the article about Amrit and Joanne and all the other great articles. 800-442-7604 www.chargesyndrome.org [email protected] David David Wolfe, President Page !2 Facebook Top Topics CHARGE Syndrome Group (6,471 members) by Julie Brandrup • Behavior, helping the school system et’s face it, sometimes the place to find information understand the child's sensory needs. about CHARGE syndrome isn’t the doctor’s office or • RSV/Immune system a medical webpage, it’s Facebook. Finding exactly • Sleep issues. L • Autism vs DB sensory diagnosis. what you need to know is often as simple as posting a • Recurring fevers message to your favorite CHARGE group and soon multiple • Anxiety - general/medical/school. When offerings of advice and support will pop-up. * did your child notice they were different? Facebook, with its large, diverse, and rapidly evolving • Teaching organization skills to children with multi-sensory issues knowledge base, has greatly benefitted our families. It’s • Dental care/teeth coming in weird/odd personal and immediate and the information is coming from angles people who have lived with CHARGE syndrome. The • Weight gain CHARGE Syndrome Foundation is looking for ways to take CHARGE UK (875 members) advantage of this resource and the information it holds. • Constipation/gas/gastrointestinal issues Popular topics on the various CHARGE Facebook pages • Transitioning child to adult hospital help the Foundation develop future webinars and other • Weight/height issues • Swallowing materials and prioritize the areas of our website that need • Networking with local families based on additional information. a common symptom. • Behavior (hair pulling) Resources and Materials Committee member Chantelle • Teeth grinding/dental McLaren compiled a list of questions frequently asked on • Toys for sensory needs (links needed for non US residence) several of the group pages (at right). Communications • Schools and immune systems, dealing Committee member Jennifer Call researched a few of the with schools being hygienic more common topics to help you get started with on your • Bruising easily search for answers to your specific questions (next page). • Vestibular system ... why CHARGE kids (and adults) will seem to defy logic (i.e., Additional CHARGE Facebook pages will be researched can bike in a straight line, but can't seem and other topics will be addressed in the future. to walk without bumping into things) It is exciting to see our CHARGE community connect and Adult CHARGE group (112 members) support each other on social media. It is also easy to see • Navigating work vs not working related to disability and medical coverage. that we have so much in common no matter our age or • Insecurity location. We need to continue to look for ways to take advantage of technology and our wide knowledge base. CHARGE Australia/NZ (472 members) Using common themes from Facebook, website searches, • Teeth grinding • Sensory toy suggestions/suppliers conference feedback and surveys, the CHARGE Syndrome • Behavior and dealing with strangers' Foundation hopes to be able to keep our materials and reaction to the child's behavior. resources up to date and relevant to everyone’s needs. • Improving communication between parents and the school system If you would like to turn your Facebook time into volunteer • Disciplining kids with multi sensory issues. hours for the Foundation, please contact me to join the • Transitions from sheltered childhood to Resources and Materials Committee for this important adulthood work. We especially need input from parents of younger children with CHARGE. CHARGE Syndrome - Members Only (1971 members) • Immune issues *Keep in mind that another family’s response to a question • Help connecting to families posted on social media is no substitute for professional • Gut issues advice. Page !3 Frequently Asked Questions … and Some Answers Behavior Challenges - Communication about the way children with Communication Between Parents CHARGE behave because, ‘Oh, 1 well, it's just autism.’” Behavior is communication. This and School 4 This topic will be addressed in means that we use behavior to The Education Professional depth in the future. relay a message to other people. Packet was developed to provide If we understand the purpose of a brief introduction to the the behavior, then any behavior complex world of CHARGE and Weight, Height, and can make sense. Tim Hartshorne, some strategies to consider in 7 Growth Concerns a CHARGE syndrome behavior education and therapeutic Although some children with expert, addresses this topic in settings. The packet is available CHARGE have growth hormone the Management Manual for for download: CLICK HERE deficiency, much of the slow Parents: CLICK HERE growth in CHARGE is likely due Sleep to nutritional status and general Behavior Challenges - 5 Issues medical problems. Growth issues Changing Behaviors Research has found evidence of associated with a delay in puberty 2 significant sleep disorders in well occurs in a large number of Eliminating “misbehavior” is not over half of children with children with CHARGE. There is achievable and by itself is most CHARGE. Sleep cycles are evidence that adolescents likely not desirable. Behavior is frequently disturbed, even in continue to grow into their 20s. not random. All behavior has a those without significant visual CLICK HERE purpose. The primary objective impairments. The cause is of behavior management is to unknown: CLICK HERE (see page understand the purpose and Vestibular 15) for information presented at communication underlying System the 2015 conference and CLICK 8 misbehavior, and to use that to The Vestibular system is unique HERE for a thesis abstract on the help the child find more in providing a continuous flow of subject. CLICK HERE for a appropriate communication information between the person published research paper. methods to achieve their goals. and the environment; it tells a See page 159 (Section IV - 2C) of person how they are interacting the Management Manual for Autism in the environment and it Parents: CLICK HERE 6 Diagnosis monitors and directs muscular Do children with CHARGE also activity and body position to Understanding the have autism? Some may be maintain secure and functional Child's Sensory Needs labeled "autistic" because they postures. David Brown discusses 3 do not appear to make eye the interplay between the A child's brain is a sensory contact and they have poor vestibular system, vision, touch processing machine, nourished communication skills due to and proprioception in this article by having fun through play and deafblindness. CLICK HERE for CLICK HERE and in this CHARGE movement. The child who learns an overview of how sensory loss Syndrome Foundation webinar to organize his play is more likely influences development. CLICK HERE.
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