If you haven’t noticed yet, this is Volume 20, Issue 1 of the newsletter, which means this is the 20th year of publication for CHARGE Accounts, which was started in 1989 by Marion Norbury and Meg Hefner, predating the Foundation by several years. Look for a history of the Newsletter in an edition later this year. I would like to thank the Education Committee for helping to solicit articles for this edition of the newsletter, and especially thank Lisa Weir for bringing it all together. The new, online newsletter is a Herculean effort and without Lisa’s expertise with technology we would never be where we are today. If you are interested in writing an article for any future issues of CHARGE Accounts, please contact Lisa at lisa@chargesyndrome.org It’s hard to believe that we only have 15 months left until we meet in Orlando for our 10th International Conference. Putting on these conferences requires thousands of hours of work and we are in need of volunteers to help on the conference committee. If you live in the Orlando area, or if you live 3000 miles away you can still be a big help. Please contact Janet Murray at janet@chargesyndrome.org and she can let you know exactly where you can be of assistance. If helping with conference is not your thing, you can participate in the Foundation by joining one of our other committees. Please visit our website at www.chargesyndrome.org to see what is best for you. INSIDE THIS ISSUE: Social Issues in Middle School Fundraising/Family Event Notices Multi-Modal Communication CHARGE In the News Conference 2011 Transition to Adult Life Assistive Technology Bittersweet World of CHARGE How Karate Changed My Life OFFICERS President: Neal Stanger Vice-President: Lisa Weir Treasurer: David Wolfe Secretary: Brownie Shott DIRECTORS Cynthia Antaya Diane Haynes Matt Murray Marilyn Ogan Pamela Ryan Lori Swanson John Wynne SPECIAL ADVISORS Meg Hefner Kathy McNulty ADMINISTRATIVE ASSISTANT Lori Bookstaver EDITORIAL STAFF Lisa Weir Meg Hefner, M.S. President’s Message Perkins Presents... CHARGE Syndrome: The Impact on Communication & Learning CHARGE Accounts VOLUME 20, ISSUE 1 From Perkins: .This insightful webcast explains the physical, sensory and neurological issues shared by many children with CHARGE and how these issues can affect their success in school. Martha Majors, who has worked with many children with CHARGE in the Deafblind Program at Perkins, offers guidance for educators in developing an effective educational program that will improve the emotional well-being and success in learning for students with this syndrome.. To view the webcast online, visit http://support.perkins.org/chargecommunication © All rights reserved CHARGE Syndrome Foundation Inc. 2010 http://www.chargesyndrome.org SPRING, 2010 Celebrating 20 Years of CHARGE Accounts! PAGE 2 Addressing Social Challenges of Students with CHARGE Syndrome in Middle School: a Practical Approach Nancy Salem-Hartshorne, PhD., Central Michigan University Mitchell T. Ridley, Student, Mount Pleasant West Intermediate School Many children with CHARGE have social challenges. As they grow into early adolescence, these become more prominent. Even as many adolescents with CHARGE seem to be on-track academically, they may remain behind their peers socially, appearing immature. During the middle school years, when social status becomes all important to young teens, this can be particularly problematic. This article provides some practical suggestions for parents and school personnel to assist adolescents with CHARGE syndrome to make better social connections during those sensitive years. 1. Inclusive Education: The number one way to encourage social acceptance in school is to be sure all students are educated together. Connections and friendships are made most easily when students have regular access to one another. Think about where you met your spouse or best friend. More than likely, it was because you both were a part of a larger group that got together regularly. If you had never met or spent time together, you would not be together today. This is also true in school. Children who are segregated from nondisabled classmates for all or part of the day are just not going to make connections with those classmates unless given specific opportunities to do so. When students are educated together, they spend time together, work together, and create friendships. 2. Parallel/Cooperative Learning Curriculum: Okay, so let’s say you have an individual with CHARGE syndrome included in your classroom, but they still are not making connections. Are they doing the same work as the other students? Do they have the ability to do so? If not, they may be experiencing segregation within your classroom. How can that be changed? There are at least two valid and relatively easy ways to address this problem. First, a parallel curriculum for the student can be developed with the collaborative help of the special education team. By parallel curriculum, I mean that whichever topic is being taught to the nondisabled students in your classroom can usually easily be altered to address the curricular (IEP) needs of the student with CHARGE syndrome. Second, the concept of cooperative learning can be applied. Cooperative learning is a teaching method that encourages groups of students to work together to achieve a common goal. Students rate one another’s’ progress, contributions, and overall achievement in the group. Students with cognitive or learning disabilities contribute in ways that allow them to learn at their own level and to make valuable contributions to the group as a whole. Let’s have an example: A seventh grade science class is studying plant cells and making models out of various materials. They must identify chloroplasts, mitochondria, nucleus, cytoplasm, cytoskeleton, cell wall, and cell membrane. Four .typical students. and one student with CHARGE syndrome who has some learning .limits. are in a group together. The group must innovatively brainstorm ways for everyone to contribute and cooperate to learn and achieve the objectives of the lesson. It is quite amazing how students apply themselves to this problem. The student with CHARGE has an IEP objective focused on handwriting skills, and another focused on social skills. The students decide that they will each construct two parts of the cell. The student with CHARGE is assigned the cell wall and cell membrane, and the labeling of the parts. She uses a paper plate with a layer of wax paper over it to represent the cell wall and membrane, and the rest CHARGE ACCOUNTS “When students are educated together, they spend time together, work together, and create friendships.” of the students use this as a background on which to place their more complex cell components. The students as a group make small flags to label parts of the cell. The student with CHARGE uses her best handwriting to fill in the labels. All students have participated, all students have learned, and students appreciated one another’s’ contributions to the project. 3. Extra-Curricular School-Based Activities: Encouraging students with CHARGE syndrome to take part in extra-curricular activities can sometimes be a challenge. If they are not independent, school districts must pick up the slack and provide support where needed. At other times, .natural supports. are all that are needed. Track and Cross Country programs at middle schools are often easily accessed. Large groups of students spend time most afternoons working out. An individual with CHARGE, no matter what their physical abilities may be, can be included in this activity and have lots of contact with non-disabled students, even if they are segregated during the rest of the school day. Many middle schools have afterschool programs to assist students with homework and give them opportunities to access enrichment-type programs. These are generally open to all, are often free, and usually quite accessible. Enrolling students with CHARGE in these programs will also give them more frequent access to friends. 4. Social Skills Groups: Often, school counselors, school psychologists, or school social workers will offer social skills training groups. The purpose of these is to assist students with fewer or less appropriate social skills to practice age-appropriate skills with supportive, non-disabled peers. A student with CHARGE and another student having social difficulties may meet with a school psychologist and several non-disabled, but socially adept and possibly popular, peers. They are given social scenarios to practice, such as, 1) What to do when greeted with a .high five., 2) How to respond to bullying behavior (so common in a middle school setting), 3) How to approach students to sit with them in the lunch room or to hang out with them during free time, and 4) How to react to jokes. In addition to the valuable practice, the non-disabled peers often become .natural supports. and .safe to approach. in these outside settings, giving the student with CHARGE a great starting point. 5. Circles of Friends: If the above methods have been tried and the student is still having difficulty fitting in socially, school personnel may consider creating a .Circle of Friends. to support the student. The Circle meets frequently with the student and a school advisor to discuss the students’ most prevalent social issues and find ways to address them in positive ways. Example: The student is having difficulty fitting in at lunchtime, and is not sure what to do or where to sit. Circle members may decide to each specifically invite the student to sit with them for a while until the student feels more comfortable and/or is seen as more acceptable to others in the student population. These are just a few of the research-based and well-proven ideas for helping students achieve better social skills and higher social status within middle schools. This will logically lead to the most important outcome: friendships! PAGE 3 VOLUME 20, ISSUE 1 “An individual with CHARGE, no matter what their physical abilities may be, can be included…” Second Annual CHARGE’d Up for Golf on Memorial Day Monday May 31, 2010 in Galena, Illinois Catherine Kouzmanoff Email: cat@inter7.com Miss Kitty is proud to announce the second annual CHARGEd-Up for Golf on Memorial Day Outing. Miss Kitty invites all residents, tourists, and businesses to join them for an enjoyable day of golf at Eagle Ridge Resort & Spa’s 9-Hole East Course in Galena, Illinois in support of the CHARGE Syndrome Foundation. This challenging 9-hole golf course is a Par 34. The course has numerous elevated tees, tight landing areas and large, undulating greens. This course is for everyone! All proceeds from this golf outing will support The CHARGE Syndrome Foundation, Inc.. Your donations and fees are tax deductible. Second Annual CHARGE’d Up for Golf on Memorial Day continued on next page Registration is $100/person or $175/couple Registration Deadline is Friday, May 7, 2010 For information or to participate in the Golf Outing please contact Catherine Kouzmanoff at: Miss Kitty's Grape Escape 233 S. Main St., Galena, IL (815) 238-8651 cell cat@inter7.com Schedule of Events on Monday May 31, 2010 1:00 pm Registration & Shot gun tee-off Couples Best Ball (must use ladies drive 3 times in 9 holes) 4:00pm – 7:00 pm Awards ceremony and dinner (including vegetarian dishes); Cash Bar. Participant Perks -- Churchill and Burns are sponsoring hole 1 with complimentary cigars! -- Each participant will receive a complimentary gift bag, a fabulous dinner and an opportunity to win prizes from local businesses. -- Prizes will be awarded for longest putt, closest to pin (Par 3) and closest to EAR, HEART, EYE. -- Each participant will automatically be entered into a raffle. -- Pictures will be taken of .couples/foursomes. and presented at the awards ceremony & dinner. -- PRIZE FOR BEST DRESSED COUPLE -- Win a chance to golf with a famous burlesque performer: Kitten DeVille, Francean Fanny, Sabina Kelly, and Michelle L'amore. PAGE 4 “Do you know of any particularly helpful professionals that might be interested in presenting?.” Upcoming Call for Papers Marilyn Ogan marilyn@chargesyndrome.org Soon a Call for Papers for the 10th International CHARGE Syndrome Conference, (including the 2nd Professional Day) will be sent to professional, medical and educational networks. The conference will be at the Rosen Shingle Creek Hotel in Orlando, FL. Points to ponder: What issues do you or your loved one(s) face daily? What topics do you want to see addressed in conference breakout sessions? What professionals would you like to see presenting at the conference? What do you believe to be a topic that all participants would enjoy or from which they can benefit? Do you have a particularly helpful professional that might be interested in presenting? Are there professional outlets you know, to which we need to submit the Call for Papers? Please send comments or suggestions regarding programs to Marilyn Ogan, Conference Program Chair at marilyn@chargesyndrome.org. Other conference comments may be submitted to Janet Murray, Conference Chair at janet@chargesyndrome.org. CHARGE ACCOUNTS (continued from page 3) 2011 in Orlando: Calling All Volunteers PAGE 5 VOLUME 20, ISSUE 1 Janet Murray janet@chargesyndrome.org Hello! Do you live, work, and/or play in Florida? Do you have contacts ( personal or business) in Florida? Would you be willing to help me connect with them to ask for their assistance? Although it is only March of 2010, work has already begun for the CHARGE Syndrome Foundation’s 10th biennial conference July 29-31, 2011, in sunny Orlando, Florida. As conference chair, I need to make contacts in the Orlando area as well as in the entire state of Florida. Connecting with individuals and families who have an interest in CHARGE syndrome is the first step to establishing a volunteer base for the conference. From that base, we will expand to bring in even more volunteers to assist with every aspect of running the conference: the Thursday night social, the Friday night CHARGE Idol, the Saturday Carnival and Silent Auction, and Childcare. Volunteers can come from many sources: family, relatives, friends, co- workers, community groups, boy and girl scouts, and other service organizations. Along with gathering volunteers, we are seeking sponsors and donors. To do this, we will need to contact businesses, civic organizations, state agencies, charitable organizations, and any other source we can think of to approach. We are looking for both cash donations and in kind donations such as snacks, toys, office supplies and other supplies. We need help in many areas, so even if you are not in Florida, we can still use your talents and skills to make this conference one to remember. Please send me an email if you can help or have suggestions for me. I will be making phone calls and sending e-mails to gather a base group to keep moving toward our destination. Looking forward to working with you! Janet Chip Dixon I'm 30 yr old young guy, with mild CHARGE syndrome and growth hormone deficiency, I'm Chip Dixon. I'm hard of hearing and nearsighted, and got some other physical limitations and I have been taking karate class for around four yrs now. I first heard about karate from one of my deaf friend's mom, she got my friend Eric and me into karate. Eric stayed at karate for a while, then after one of the sensei [teachers] quit (she was the only one who knows sign language, and could sign for me and Eric), Eric started to quit too! I know his reasons, but for me I decided to stay there longer. Anyway, it helped me a lot taking karate classes, been going to tournaments, been improving myself, pushing my limitations, learned about the 'I Can I Will' poster thing. It improved some of my flexibility, improved my balancing issue, and I think it has made me mature, calm, relaxed, and more responsible too! I started working for Kyoshi [one of the teachers], and it also helped me too! I have been improving my diets better, trying to cut back on junk and sweet foods, be more responsible and hard working on the job. How Karate Class Changed My Life “We need help in many areas...to make this conference one to remember.” Photo by Rosen Shingle Creek Continued on next page Chip, showing off the trophy he won at the 2009 Te-Kenjutsu-Kan 7th Annual Cup Food Drive Karate Championship. Whenever I'm at any kind of classes, or other places I'm at, I'm always in the front of everyone because of my vision and hearing problem, so I can see and hear better. I guess it’s an old habit I been doing for a long time now. One of my sensei (or shihan) knows a bit of sign language, sometimes he'll say water break in sign language! Kyoshi doesn't really know sign language, but that's okay with me. I can hear him just fine, only low voices and far away/distance voices are hard for me to hear. I can also lip read- too. Anyway, taking karate class has changed my life, and working there too! I have become more responsible and more mature, focused and calm too! I also have to break some habits, control some obsessions, and I'm doing better every day now. Future of karate...well I'm working on getting my next belt right now. And also, I'm thinking of becom- ing a kohai or shihan [master teacher] someday, to teach kids with special needs and adults someday. Maybe I will teach some people who are deaf/hard of hearing some karate too! One of my hearing friends is taking karate, and she is training to be a kohai! So yeah,karate is here to stay, I found my true calling, found something I'm good at for a change. It changed me to a better person, changed my life, and I'm not a quitter! I don't quit, I don't give up that easy I Can...and I Will! PAGE 6 “I don't give up that easy, I Can...and I Will!” -Chip Dixon Supporting Young Adults with CHARGE Syndrome toward Successful Transition to Adult Life - 10 Tips for Parents Dr. Jerry Petroff The transition from school to adult life for youth with CHARGE syndrome very often evokes the memories and experiences that parents went through in the beginning of their child's education. These are feelings of fear, uncertainty and sense of not being in control, again. Therefore, it is extremely important that appropriate steps are taken to manage this transition as smoothly as possible. These young people with the most complex and specialized education needs require specific efforts in both transition planning and its associated programming. Although this group of youth spans the entire spectrum in degree and variety of disability, there seems to be a set of similar practices that need to be considered for all. The following represent the basics for promoting successful transition to adult life for individuals with CHARGE: Start Early - Although the federal regulations mandate planning for the transition to adult life to begin at age 16, for young people with CHARGE syndrome it must start much earlier. This planning process is best initiated in late elementary and early middle school years. During these early years, children are provided experiences that will show their talents and build their skills and abilities. Expanding preferences and interests - Many children with CHARGE syndrome demonstrate a narrow set of interests and many times they focus on very specific topics. This is the time to begin to provide them with well planned opportunities to experience a wider variety of age-appropriate activities reflecting varied interests and preferences. Since variety is often met with resistance, it is better to be systematic and deliberate in your transition planning. Assure that your IEP is transition friendly - Very often IEPs are written to assure that each component is represented and therefore, schools tend to check off that they have identified a post- school outcome and that planning toward it has occurred. However, the reality sometimes shows that the goals and objectives of the IEP are not congruent and may even be disassociated from the desired outcomes. It is best to ask yourselves, how does this goal relate to my son or daughter's adult goals and outcomes? CHARGE ACCOUNTS (continued from page 5) Conduct a person-centered plan - Person Centered Planning (PCP) is a process designed to assist you and your child to plan a future that is congruent with your values, desires, and personal goals. It is a flexible planning process that supports areas of growth such as self determination, independence and overall attributes of quality of life. At the beginning of the formal transition planning period (which should be by 14 or at least 16 years old), parents should participate in a person-centered planning process that includes their son/daughter. Make sure your child is building a resume - A well planned secondary education for young people with CHARGE syndrome should present opportunities for learning that can be documented in a portfolio of accomplishments. Many youth with CHARGE do not clearly present their talents, skills and experiences. Therefore, building a resume or portfolio is a critical component of their transition planning process. In addition, the portfolio will show where there are gaps that need attention or demonstrate future needs for further education and training. There are no prerequisites for Community Based Instruction - The benefits of gaining and practicing skills in "real life" situations or within the community is well documented for all students with disabilities. Due to the perceived difficulties that some youth with CHARGE present, they may be determined as "Not Ready" for community-based instruction. It should be noted that there are no prerequisites for developing and implementing a community-based instructional program barring medical conditions or under circumstances in which parents and school personnel feel it is unwarranted. Youth should be experiencing instruction within their communities in the form of job samplings, career awareness, and recreational activities. Insist on Career Development - All students in secondary education should build from their primary education knowledge of careers nd have deliberate instruction focusing on a possible career path that they may enter. Make "real” linkages - It is critical for the all youth with disabilities to be linked to adult services and supports as well as to community partners that may benefit their transition to adult life. For youth with CHARGE this is a huge factor in assuring successful adult outcomes. Many students have interveners or personal assistants as well as a variety of supports ranging from assistive technology devices to specialized medical needs. Therefore, it is important to link to adult service agencies to assure that these supports are maintained into adulthood. Continuing education should be a post school goal for everyone - It is recognized that furthering your education is key to building a successful adult life; therefore, youth with CHARGE should plan for some type of post school education including the consideration of college. There are a growing number of college programs that are designed for youth with developmental and intellectual disabilities and therefore, a range of opportunities are available. These include everything from full 4-year college programs to adult school opportunities. However, it is important to identify and make contact with these programs while the youth is in transition. In summation, this list of tips or things to consider are presented as a "good beginning" to your consideration of the transition planning and associated educational program for youth with CHARGE syndrome. There are many available resources for parents and teachers that address the overall process of transition for students with disabilities such as the National Secondary Transition Technical Assistance Center (http://www.nsttac.org/). Remember, it does not matter where you begin planning for the future - JUST BEGIN. Dr. Petroff is an Associate Professor at the College of New Jersey in Ewing, NJ. He is also the director of the NJ Deaf-Blind Project. Dr. Petroff's research interests include transition to post-secondary life for students with severe disabilities, early communication and family life. He has been on faculty since 2001. He has recently authored the textbook Assistive Technology in the Classroom: Enhancing the School Experiences of Students with Disabilities published by Prentice Hall. PAGE 7 VOLUME 20, ISSUE 1 “There are many available resources for parents and teachers that address the overall process of transition for students with disabilities…” (continued from page 6) PAGE 8 “...it does not matter where you begin planning for the future - JUST BEGIN.” -Dr. Jerry Petroff Free webinars from PEATC 2010 Transition Training Opportunities The Genetic Alliance (www.geneticalliance.org) provided the following information on upcoming transition training opportunities: 1.) PEATC 2010 Transition Webinar Series The PEATC 2010 Transition Webinar Series began Monday, March 1. All webinars are free and will be archived within 3 business days of initial broadcast for future reference/access. CEU and CRC credits are offered for this transition webinar series. Even if you cannot join on the sched- uled days, please register to access the archives of this nationally recognized transition resource. http://www.nextsteps.peatc.org/peatc.cgim?template=webinars Information on the 2008 and 2009 archived webinar series may also be found at the above link. 2.) The Pathway from High School to a Career: Promising Strategies, Supports, and Partnerships in Secondary Transition 2010 Research to Practice Series The 2010 Research to Practice Series from the UNH Institute on Disability focuses on several unique strategies for developing effective, outcome-based educational experiences that promote the successful transition of students with disabilities and students at risk to their chosen post- secondary experiences. The sessions feature distinct content and objectives, including student- directed models support the development of career goals, sector-based strategies that link high school programs to employers and post-secondary education, ways to use assistive tech- nology to improve educational and employment outcomes, and a school-wide framework that al- lows educators, parents, and students to utilize the emphasized high school reform. Please see the individual workshops below for more information. Assistive Technology and Transition Date: Thursday, April 15, 2010 | Time: 9am to 3pm Registration Fee: $75 Instructor: Therese Willkomm High School is Transition: A Framework for Reform that Allows Schools to Educate All Students Date: Thursday, May 13, 2010 | Time: 9am to 3pm Registration Fee: $75 Instructor: JoAnne Malloy Location: Holiday Inn, 172 North Main Street, Concord, NH Full workshop descriptions, presenter information, and online registration: Visit http://www.iod.unh.edu/events.html or call 603.228.2084. *Registration fees include continental breakfast, lunch, and materials, except the March 1 session, which does not include lunch. *Workshops qualify for Staff Development Credits/Contact Hours. CHARGE ACCOUNTS CHARGE in the News from UK and Australia PAGE 9 VOLUME 20, ISSUE 1 Royal Reception for Christopher This article appeared in the Isle of Wight County Press Online on November 28, 2009. The article can be found online here: http:// www.iwcp.co.uk/news/news/royal-reception-for-christopher- 30003.aspx By Jon Moreno A teenager left disabled by a rare life-threatening condition, received a per- sonal congratulation from Princess Anne at Buckingham Palace this week when honoured for his achievements with St John Ambulance. Christopher Ayers was one of 45 young people from around the country to attend the reception, which recognised the commitment of St John Ambulance badgers, cadets and young carers made throughout the year. During Wednesday’s Young Achievers’ reception, the 15-year-old cadet chat- ted to the Princess Royal about his experiences, what he enjoyed most about volunteering with St John Ambulance and his aspirations of becoming a para- medic. Christopher, of Colwell Lane, Freshwater, who joined St John Ambulance two years ago and who received the charity’s IW Cadet of the Year award, was born with Charge Syndrome, a rare, life- threatening condition which affects different parts of the body. The St George’s School student has managed to complete first-aid training and other modules while coping with a heart condition, breathing through a permanent tracheotomy, profound deafness and impaired sight and hearing. He said meeting Princess Anne was very exciting and he is delighted he will soon receive a Young Achievers’ Award. "I enjoy the training and have made a lot of friends. It has given me a lot of confidence," he said. Christine Stratton, commissioner of the IW branch of St John Ambulance, said the decision to nominate Christopher for this year’s award was a unanimous one. "When you consider the number of medical conditions he has, Christopher has been brilliant. He’s always enthusiastic about everything he does and likes to participate in all he possibly can," she said. A tough year ends on a high for Ringwood North boy This article appeared in the Manningham Leader on December 19, 2009. The full article can be found here: http://manningham-leader.whereilive.com.au/news/story/a-tough-year-ends-on-a-high/ A BRAVE little boy was given the chance to fly high after battling through a tough year. David Sedgwick, 11, saw what life was like at the top when his mates at the Wyena Pony Club treated the Ring- wood North youngster to a helicopter ride. Suffering from a rare condition called CHARGE syndrome, David has spent most of the year in and out of hos- pital. But his friends at the South Warrandytepony club organised the special day so he could finish the year on a high note. In 2007, the Make a Wish Foundation granted David’s wish of owning a horse and he now spends most of his time with his four-legged friend Josie at the pony club. David’s condition means he has hearing and vision problems, a silent heart murmur and difficulty keeping solid food down. This year, David was also struck with pneumonia and hair loss condition alopecia. His mum, Debby Sedgwick, said doctors often attributed David’s rapid recovery during hospital stays to his desire to get back on his horse. .The pony club have been absolutely wonderful to us and the helicopter ride was a really magical time for David. He loved it,. Mrs Sedgwick said. .It has been a tough year, but David has always kept a smile on his face, but it was even brighter that day after the generosity of the pony club.. St John Ambu- lance award winning cadet Christopher Ayers, 15. picture by Jennifer Burton. David Sedgwick's friends at the Wyena Pony Club treated him to a helicopter ride. “I enjoy the training and have made a lot of friends. It has given me a lot of confidence.” PAGE 10 “Building an effective communication system for any child begins with a belief—a belief that the child is already communicating!” Chat PC – sample of an augmentative commu- nication device Photo credit: www.saltillo.com Strategies for Supporting Multi-Modal Communication: Practical Pointers for Families Dr. Susan M. Bashinski Families of children and adolescents with CHARGE syndrome frequently report that development of an effective communication system for their child is one of their top priorities, if not their single most critical concern. This article is written for families whose children struggle the most with communication—those children and adolescents who neither speak nor sign, or who demonstrate only a very limited number of spoken words and / or expressive manual signs. Building an effective communication system for any child begins with a belief—a belief that the child is already communicating! Whether it’s a family or an educational team, the most significant first step is commitment to the idea that the child’s communication partners are responsible to .meet the child where she is.—and figure out what the child is currently communicating through her behavior. A communication partner’s pledge to .listen with more than just ears. (that is, to listen with eyes, hands, and heart) and to assign meanings to the behaviors a child demonstrates most frequently is the place to begin. Participation with augmentative devices Though it is critical to operate from a belief that every child with CHARGE syndrome communicates, it is also very important for families and educational teams to differentiate .communication. from .participation.. It is not uncommon for a special education teacher or speech pathologist to make some sort of voice output device available to a child who does not yet speak or sign, and then provide necessary supports to assist her to use the device to make a comment or provide information. This type of class participation is very important—it not only provides practice for the child in .taking a turn. (so critical to both social and communication development), but even more importantly, it potentially changes the way in which a learner with CHARGE is viewed by her classmates (i.e., it helps her to be perceived as a .communicator.). Such opportunities for participation should be promoted! Even so, it is critical that teachers and families not be misled to believe the child’s true level of communication development matches the level of the words she .speaks. through augmentation. A misunderstanding of this difference, especially for those children who struggle the most with communication, can have long-term, negative effects—by preventing the child from receiving communication programming directed to her actual needs and instructional level. Schedules One effective strategy for helping to build a bridge from participation to true communication is the use of a schedule. Most adults rely on some sort of calendar or planner to organize their days; similarly, a child with CHARGE who does not yet speak or sign can derive numerous benefits from a concrete schedule (American Foundation for the Blind, 2010). A concrete schedule provides structure to a child’s day, makes the day’s activities more predictable, and results in the world feeling like a safer place to be. A beginning schedule for a child who experiences multiple disabilities will be an adequate support for early communication development if it includes information regarding what the child: has done, is doing presently, and will be doing next. In addition to organizing a child’s day, use of a schedule can help to ease the anxiety associated with a transition, particularly from engagement in a highly preferred activity to a lesser preferred activity. Visual supports A second key strategy for building communication skills involves Visual support used to teach order of events. CHARGE ACCOUNTS Continued on next page Photo source: http://www.dinf.ne.jp/doc/english/resource/brenda.html the use of visual supports. Though related to schedules, visual supports are more broadly based. Use of visual supports involves the addition of a variety of visual cues throughout a child’s activities and environments, to make the abstract language system more concrete. For example, a sequence of photographs could be displayed next to the bathroom sink, to lead the child through washing her hands; a display of object cues mounted on a cabinet door could assist the child to set the table; or photographs of classmates could be used as attendance is taken, to help the child learn classmates’ names. The addition of visual elements to the contexts a child encounters throughout the day can help her to learn there are many different ways to communicate. Visual supports are appropriate for most children with CHARGE because these help to provide a enriched environment for literacy learning; visual supports are even helpful for children who speak or use manual sign who sometimes lose speech intelligibility when they become anxious. Gestures A final element critical to the establishment of an initial communication system with a child who has CHARGE syndrome is the incorporation of conventional gestures. It is not uncommon for speech pathologists or special education teachers to .jump. too quickly to try to teach abstract language to a child who does not yet speak or sign. In typical communication development, young children learn and rely on a variety of gestures for communication—long before they begin to speak. Examples include: handing an object to another person for help to activate it; extending an open palm to request an item; and pointing to an interesting object. Families and educational teams are strongly encouraged to not overlook the importance of gestures as a means of expression and, for those children with CHARGE syndrome who do not currently use gestures, to implement a program to systematically teach at least some gestural communication. One strategy with demonstrated effectiveness in this area is adapted prelinguistic milieu teaching (A-PMT). Several video clips that demonstrate A-PMT techniques are available on the internet at: http://www.nationaldb.org/ISSelectedTopics.php (Malloy & Bashinski, 2009). References: American Foundation for the Blind. (2010). Using a schedule with your child. FamilyConnect: For parents of children with visual impairments. Retrieved from http://www.familyconnect.org/parentsite.asp? SectionID=79&TopicID=368&DocumentID=4059 Majors, M. (n.d.) CHARGE syndrome: The impact on communication & learning. Perkins School for the Blind webcast. Retrieved from http://support.perkins.org/site/PageServer? pagename=Webcasts_CHARGE_Syndrome_Impact_on_Communication_and_Learning Malloy, P., & Bashinski, S. M. (2009, September). Teaching prelinguistic communication. Practice perspectives-Highlighting information on deaf-blindness: Newsletter of the National Consortium on Deaf-Blindness, 1(5). Retrieved from http:// www.nationaldb.org/ISSelectedTopics.php Dr. Susan M. Bashinski is an Associate Professor at East Carolina University, Greenville, North Carolina with more than thirty years experience in the field of Special Education. She has been the recipient of numerous teaching awards. Dr. Bashinski has extensive experience in providing professional development and technical assistance across the United States, particularly in the areas of augmentative communication and nonsymbolic communication for learners who have low-incidence disabilities, including deaf-blindness. She is currently conducting research on how cochlear implants impact the development of young children with deaf-blindness, and the PAGE 11 VOLUME 20, ISSUE 1 “In typical communication development, young children learn and rely on a variety of gestures for communication” Sample of a visual schedule depicting a morning routine. PAGE 12 Ethan, using technology to magnify learning materials Assistive Technology from a Parent’s Perspective Jody Wolfe What would we do every day without our e-mail and cell phones? We live in a technology- based world and count on it to stay connected with the world. Technology can give us instant information, but can also take over our lives. Having a child with CHARGE syndrome, I appreciate the many opportunities technology provides for our children. Recently, I had the wonderful experience of watching my son Ethan win an assistive technology award given by Infinitec, the technology branch of United Cerebral Palsy of Greater Chicago. There were eight other children from the Chicagoland area who shared the honor of winning this award. Each has different disabilities, but their similarity is that they use their assistive technology to help them to learn and communicate. Assistive technology (AT) is any device or service that can provide assistance to anyone with physical or developmental disabilities. AT devices can help with communication, mobility, writing, hearing, vision and activities of daily living, to name a few. AT devices can either be high-tech or low-tech. With all of the attention given to high-tech devices, it is important to remember that low-tech devices can also provide benefit and certainly are more cost effective. Low-tech devices can be as easy as using raised line notepaper, a slant board, or a pencil grip. Ethan is seven years old and uses among other things a Dynavox, a CCTV (closed circuit television), an enlarged keyboard and magnification software for his computer, a monocular, and a cane. Dynavox is a speech-generating augmentative communication device which allows him to communicate when signing or writing is not an option. For example, Ethan’s writing is not very legible because of fine motor delays. So instead of having him write the answers to his math homework, he will answer them on his Dynavox. CCTV allows for magnification of materials. Because Ethan’s vision impairment prevents him from seeing at a distance, his magnifier (called an Onyx) has a camera and monitor which allows him to see the teacher and the blackboard even when he is far away from them. With these devices at school, he is better able to participate in educational activities and discussions. It also provides him a way to communicate with more confidence and less frustration. Another very useful resource is Ethan’s assistive technology team. They make sure he has all of the necessary equipment available to him. If your child is not using assistive technology at school, do your research on what technology may be the best for your child. There is so much information on the internet about assistive technology. There may be local seminars that you can attend through your special education school district or in the community. I had the opportunity recently to attend an assistive technology vendor fair sponsored by the Assistive Technology Industry Association (ATIA). At this fair, there were over 100 vendors present displaying their assistive technology products. After spending three hours at the fair, my head was spinning, but I had so much more information about different technology options that are available for Ethan. In Illinois, there is an agency called Illinois Assistive Technology Program (www.iltech.org) which provides alternative financing, device reutilization, and even has a device loan program that you can use to try out a device before purchasing. Check to see if your state offers a similar program. I am thankful everyday that Ethan was born in time where assistive technology is readily available. Ethan has continued to overcome the many obstacles in his life and I believe the use of assistive technology has played a large role in his accomplishments and progress. He would not be where he is today without technology. CHARGE ACCOUNTS Ethan with his mom, Jody, receiving his Assistive Technology Award “I am thankful everyday that Ethan was born in time where assistive technology is readily available.” Bittersweet World of CHARGE PAGE 13 VOLUME 20, ISSUE 1 Sara Buono October 18, 2007: My husband and I were in the O.R. awaiting the birth or our first child. I had to have a C-section because the baby was in a breech position. If only that were the only issue we had to face. Nicholas James was born at 2:01 a.m. While waiting for our newborn’s first cry, we realized something was terribly wrong. We never got to hear that cry the day he was born. Nicholas James had to be intubated. The Ob/Gyn assured us the baby must have swallowed some amniotic fluid, which is common and everything would be OK. Eight hours after Nicholas’ birth was when we first heard the words .CHARGE syndrome.. CHARGE was suspected because the doctors were unable to pass a naso-gastric tube through Nicholas’ nares. We were told that Nicholas had bilateral choanal atresia. Our expectations of a healthy newborn were shattered. This began as what we refer to as .our darkest days.. At two days of age, Nicholas had to be transferred to a children’s hospital 40 miles away from our home. This is where Nicholas would undergo his first surgery: choanal atresia repair. Overwhelmed, heart-broken and scared by everything CHARGE encompasses, we learned that choanal atresia often requires multiple surgeries, the possibility of visible stents and sometimes even a tracheostomy. Nicholas underwent choanal atresia repair at six days old. Nicholas’ ENT, Dr. Parikh, of the Children’s Hospital at Montefiore (Bronx, NY) performed the surgery successfully. We were told that we would have to wait six weeks to know whether or not there was a need for further atresia repair. Dr. Parikh ordered the off-label use of Ciprodex twice daily via nares. Ciprodex has antibiotic and steroidal components. This combination helps to reduce the risk of the nares scarring down (which is why so many need multiple surgeries). After a few weeks of Ciprodex, Nicholas was switched to Nasonex due to high BUN and creatinine levels. Those resolved immediately once Ciprodex was discontinued. With weekly scopes of Nicholas’ nares, we heard a resounding .nares are wide open.. By week six, we were in the clear. No need for stents or even another surgery. We owe this success story to Dr. Parikh and his use of Ciprodex. We have heard of many horror stories where patients needed up to 12 surgeries for choanal atresia alone. After all the surgeries our kids have to endure, this surgery should be done one time only whenever possible. Our children are at a higher risk for adverse reactions to anesthesia and we should try anything to reduce their exposure. Although, Nicholas required a trach anyway (due to a depressed respiratory drive), it wasn’t due to choanal atresia. This enabled Nicholas to become deccanulated at five months of age, bypassing many of the repercussions of having a tracheostomy. Nicholas has been decannulated since March of 2008. He is a very happy, charming and resilient little boy. He makes a lasting impression on everyone he encounters and leaves them with a smile. This is just one of our many experiences with the bittersweet world of CHARGE. Nicholas James Buono, whose mother describes him as, “happy, charming and resilient” “Our children are at a higher risk for adverse reactions to anesthesia and we should try anything to reduce their exposure.” It’s All About Perspective Jeanie Colp It's funny how our definition of success has changed since becoming part of the CHARGE world. MacKenzie recently surprised me with an "I hate you." I was shocked and my mom was mortified; but my shock was with the fact that she said .hate.. H's have always been hard for her. I was kind of proud. PAGE 14 “We were filled with so much pride and joy that our little brother shares the same passion on the ice.” Josh, Gabby and David Sirota Siblings Making a Difference Skate for CHARGE Letter written by Josh Sirota, on behalf of himself and his sister, Gabby Dear All, The word .charge. is defined as .to make an onset or rush as an attack.. To our family it means something a world apart. To us it means a syndrome. CHARGE syndrome is a recognizable genetic pattern of birth defects and occurs in around 1 in every 10,000 births world-wide. It is a very complicated, almost cryptic syndrome to understand and, unfortunately, my little 6 year old brother was born with it. CHARGE syndrome affects sensory, physical, medical, and developmental aspects of the body. When David was born, he could not eat and breathe at the same time, he could not hear well or see well and had more surgeries before he turned 3 than all my other family members combined. This means that David lives a life far different from many other individuals, but so does our whole family. David is considered to be DeafBlind because he has problems with both his hearing and his vision. David wears a cochlear implant in his ear to enable him to hear and he needs glasses to see. Because our brother does not yet talk, we use sign-language to communicate with him and day by day we are striving to learn more signs. David now attends the Deafblind program at the Perkins School for the Blind located near Boston, MA where he is taught both education and essential life skills that will enable him to have a place in our society. You probably have a job and with the help of Perkins, David will eventually be able to have one as well. I am a hockey player and I always dreamed for David to skate on his own. Because David struggles to keep his balance, I did not think it was possible. But, over the holidays we went ice-skating with my family and decided to let David try to ice skate. We put little skates on his feet and took him on the ice. A miracle happened!!! He was skating with our help. He wanted to keep on going and did not stop for a whole hour. While on the ice, David’s face lit up with happiness. His expression just stayed frozen in our minds. We were filled with so much pride and joy that our little brother shares our passion on the ice. This gave my sister and me the idea of having a Skate for CHARGE fundraiser. We are very proud of our brother and believe that with the appropriate education David can do anything. Our little brother David is not alone. He is one of hundreds of kids in New Jersey and thousands across the nation who have CHARGE syndrome. We want others to know about CHARGE syndrome and to know that with the appropriate education, kids like my brother can learn and grow up to be productive members of society. You may be wondering why we are writing this letter to you. Believe me, it is not to make you cry and feel sympathy towards us. The purpose for this letter is to ask for your support in helping to make our fundraiser .SKATE for CHARGE. a huge success. The money we raise will go towards the education of children with CHARGE syndrome. The CHARGE Syndrome Foundation is a 501(c)(3) organization and your donations are tax deductible. For more information about CHARGE syndrome and the CHARGE Syndrome Foundation please visit www.chargesydrome.org. Please join us on April 11th at the Mennen Sports Arena located in Morris Township, NJ from 12:15 pm – 1:45 pm. If you are not able to make it, you can still donate through Charge it for CHARGE online at http://www.kintera.org/faf/ home/default.asp?ievent=324400 . Thanks so much for your support. Your donation will make an impact on the future of these amazing children who do everything despite all odds!!! Josh and Gabby Sirota Front and back view of a t-shirt designed by Gabby Sirota to promote awareness of CHARGE syndrome CHARGE ACCOUNTS Wisconsin Dells CHARGE Family Gathering PAGE 15 VOLUME 20, ISSUE 1 Crystal really needs to hear back from any families planning to attend as soon as possible to make the arrangements and reservations for the events. The deadline for registration is May15th, 2010. Below you will find all of the information about what promises to be a great, fun- filled family event. Our CHARGE family weekend is planned for July 23-26th 2010. We will be staying at: Wintergreen Resort www.wintergreen-resort.com 60 Gasser Rd, Wisconsin Dells, WI 53965 1-800-648-4765 Tell them you are with the CHARGE Family Weekend group. Rooms are $109 per night if you stay Friday- Monday, or $119 a night if you only stay Friday –Sunday. This price is for a double queen room. These rooms will be held until 3 weeks before our CHARGE family weekend. You also get a free pass for each night you say to the Mt. Olympus water and theme park. www.mtolympuspark.com Activities for the weekend: Friday July 23rd at 1:30pm Knuckleheads Bowling and Indoor Amusement Park 150 Gasser Rd Lake Delton, WI 53940. www.dellsknuckleheads.com We will be bowling and having food and drinks. Price is $8.50 per person. That includes one game of bowling, pizza and soda. I thought this would be a great place to start our weekend were we will all be together and having fun. There is an indoor amusement park in the bowling alley as well -- if you want to do that, it costs extra. Saturday July 24th Noah’s Ark Water Park 1410 Wisconsin Dells Pkwy, Wisconsin Dells, WI 53965 Open from 9am-8pm www.noahsarkwaterpark.com Price is $29.50 for kids 13 and under, $31.50 for everyone 13 and older, 2 and under are free. This price includes entry to the water park and our catered lunch. We will also have our own Picnic Pavilion so we can do our g-tube feedings and whatever else needs to be done in private. This is an awesome price and we are still getting a great discount, normal cost to get into the park is $34 per person. Sunday July 25th Wisconsin Dells Ducks Tours 1890 Wisconsin Dells Pkwy, Wisconsin Dells, WI 53965 www.wisconsinducktours.com Time: TBA As soon as I know how many people want to go I can book our time and we can all be on the same tour. Price is $17.25 for everyone 12 and over, $7.50 for ages 6-11, 5 and under are free. This is a wonderful and fun ride on a Wisconsin Dells Duck, ducks can go on land and water. The ride is fun and has beautiful sites to see. I thought these were great things to do as a group and it also give us time to do other things with our own family. If you want to see what else you can do or see in the Dells check out their website at www.wisdells.com Printable sign up sheet is on the next page of the newsletter. Hotel cancellation policy is 72 hours notice. Once tickets are ordered for individual events, there are no refunds. Please find a printable registration form on the next page of the newsletter. REGISTER TODAY! PAGE 16 CHARGE ACCOUNTS Wisconsin Dells CHARGE Family Weekend Registration Form Come and join us for a wonderful weekend of fun, food, family and friends!! Contact person for family:________________________________________ Address______________________________________________________ City__________________________________State________Zip_________ Phone number (_______)________________ Best time to call if I need to contact you _________ Family members attending: Name ______________________ Age_______ Name_______________________Age_______ Name_______________________Age_______ Name_______________________Age_______ Name_______________________Age_______ Name_______________________Age_______ Name of family member with CHARGE______________________ Email address__________________________________ May I share your info with other attending the weekend? Yes_____ No_____ Events you will be attending:. Knuckleheads Bowling party ($8.50 per person) Number of adults______ Number of kids_______ Total Cost________ Noah's Ark Water Park ($31.50 for >12, $29.50 for 2-12) Number 13 and older_____ Number of under 13 _____ Total Cost________ Wisconsin Dells Ducks Tour ($17.25 for >11, $7.50 for 6-11) Number 12 and older______ Number 6-11______ Number under 5 (free) ______ Total Cost_____________ Total cost for all events for your group_______________ Please send your money and forms in to Crystal Masionis by May 15th, 2010 2311 N. Lancaster Ln Round Lake Beach, Il 60073 OR email them to me at crystalm1476@hotmail.com “I will take care of all the fees and make sure all you need to worry about is coming and having a great time. Please make sure you make your reservation to get our discounted price before May 15th 2010.” -Crystal Masionis, Event Organizer CHARGE Syndrome Foundation Lifetime Members PAGE 17 VOLUME 20, ISSUE 1 THE BOARD OF DIRECTORS FOR THE CHARGE SYNDROME FOUNDATION WOULD LIKE TO ACKNOWLEDGE THE SUPPORT AND COMMITMENT OF ITS LIFETIME MEMBERS. William Alexander, British Columbia, Canada Linden & Rebecca Anderson, Washington Brian & Maureen Bartkowiak, Michigan Jason & Katherine Bender, Ohio Kim Blake, Nova Scotia, Canada Joey Blanchard, Minnesota Margery Bodenhamer, Ohio Julie & Jay Brandrup, Alabama David Brown, California Kyna Byerly, Missouri Garret & Sarah Cawthon, Kentucky Donna Conway, Iowa Paul & Patricia Cosenza, Georgia Ellen Cox, North Carolina Jack & Dixie Cunkelman, Arizona Philip & Tracey Cutcliffe, Prince Edward Island, Canada Sandra Davenport, Minnesota Maddie Dobelstein, Illinois Sheryl & Rio Doolittle, Iowa David & Fredella Dowdy, Oklahoma Audrey Dwyer, New York Wade & Aliza Edwards, Massachusetts Sharon & Dan Evans, Kentucky Kim & Louis Fisher, Illinois Monica & Padilla Froning, California Peter Gagliardi & Caroline Garzotto, New Jersey Bill & Ann Garner, Alabama Gino & Danielle Gaucher, Connecticut Sander & Shirley Gelfand, California Sharon Gettinger, Alaska Paul & Noel Gilman, Georgia Randall & Michelle Goodwin, Texas Susan & Craig Graham, Ontario, Canada Bryan & Holly Greaves, Ohio Tim & Nancy Hartshorne, Michigan William & Margaret Hecker, Colorado Meg Hefner, Missouri Raymond & Shawn Herrick, Kentucky Steve & Susan Hiscutt, Tennessee Suzanne Holman, Arizona Jane Horne, New York Huynh & Victoria Chi Yeu, California Sarah & David Irving, Maine Holly & Victor Johnson, Michigan Damon & Allie Jones, Alabama Emrick & Kathy Jones, North Carolina Jeff & Cathie Josephson, New York Michael & Kim Kazmirski, Michigan Dean & Martha Kelly, Washington Patrick & Lorraine Kelly, Arizona Toni & Greg Kijowski, Illinois Holger & Kristen Koehler, Massachusetts Dan & Melanie Kohlruss, Saskatchewan, Canada Hari & Priya Koppuravuri, California Scott & Courtney Koumjian, Massachusetts Catherine Kouzmanoff, Illinois Joseph & Shelley Kozuch, Pennsylvania Mary Kramer, Missouri Sandy & Phillip Kurby, Illinois Roland & Jill LaMorge, Texas Joanne & Michael Lent, New Jersey Lauren Lieberman, New York Linda & Jim Ludwig, Illinois James & Chelsea Mancuso, California Hannah & Vince Maniago, California Melvit Marroquin & Freddy Fermin, New York Tim & Raeann McCants, Illinois Betsy McGinnity, Massachusetts Luciana McLean, Texas Michael & Jeanne McMullen, Pennslyvania Joe & Kathy McNulty, New York Kathy McNulty, New York Sue Meckley, California Joyce Mitchell, Utah Douglas & Lynn Moore, Ohio Paulo Moreira, Lisbon, Portugal Bonnie Morrison, Maryland Kate Moss, Texas Matthew & Janet Murray, Massachusetts Trent & Lori Myers, Texas Megue Nakazawa, Yokohama, Japan Dennis & Colleen O’Toole, Ohio Marilyn & Rick Ogan, Indiana Marc & Sandra Parker, Illinois Michelle Partridge, Alabama Stephen Perreault, Massachusetts Matthew & Laura Plastina, New York Ronald Podoll, Kentucky Chris & Tanya Rago, California “Lifetime members demonstrate their lifelong commitment to CHARGE.” Continued on next page PAGE 18 THANK YOU LIFETIME MEMBERS! How You Can Become a Member CHARGE Syndrome Foundation Lifetime Members Becoming a lifetime member or a yearly member has never been so easy. This year, we have introduced an online membership system that saves the hassle of printing and mailing forms to you and having you mail them back to us. We’ll save some time and some trees in the process. If you visit our membership page on the website at http://www.chargesyndrome.org/membership.asp, you will find all of the information and options about becoming a member. You will also see a button in the top right corner that looks identical to the one pictured at left. If you click on that, it will take you directly to the online membership form, where you can enter your information and either join the Foundation or renew your membership. It’s very simple and quick! Also, if you are reading this online, you can click right on the button here in the newsletter to take you to the online membership form. If you prefer to mail in your membership and payment, that option is also still available. There is a printable form on the membership page that you can print off, fill in and mail back with your payment. Whether you choose to become a lifetime or yearly member of the Foundation, we appreciate your support and look forward to having you! Click on the membership button below if you are reading online to go directly to our membership form. CHARGE ACCOUNTS Bruce & Lora Rathbone, Washington Barbara Rivers, Minnesota Alex & Susan Roush, Georgia Dorothy Roush, Georgia Pamela Ryan, Massachusetts Eliyahu & Leana Schwartz, Maryland Michael & Laurie Schwartz, California Consolato & Julia Sergi, Innsbruck, Austria Tom & Brownie Shott, Texas Steve & Esther Sittenauer, Louisiana Pete & Vicky Smith, Indiana Shelly & Jon Snyder, Minnesota Micki Springer, Florida David & Marilyn Stanger, New York Leonard & Joan Stanger, New York Neal Stanger, New York Sheri & Neal Stanger, New York Deanna & William Steinhauser, Illinois Melva Strang-Foster, Alabama Anne Sturm, Maryland Jay & Katie Susil, Ohio Lori Swanson, Wisconsin James & Sally Thelin, Tennessee James & Denise Timberland, Iowa Kevin & Theresa Troupe, Michigan Carlos & Yasmina Tuero, California Dwayne & Winnie Van Besien, Texas Emmadell Vernon, Texas Doug & Jane Von Dohre, Ohio Graeme & Lisa Weir, New Brunswick, Canada Tom & Tamara Wendoll, California Jeffrey & Lori West, North Carolina Amy Wishnick, Illinois David & Jody Wolfe, Illinois Joel & Susan Wolfe, Illinois Lee & Wendi Wood, Missouri Rosemary Wynne, Ohio Tim & Carolyn Young, Missouri Walter & Vivian Zagrobski, Michigan In Memory of Bobby Hammer PAGE 19 CHARGE ACCOUNTS THANK YOU FOR YOUR GENEROUS SUPPORT OF THE CHARGE SYNDROME FOUNDATION Bellaggio Travel Club Jamie Adkins Darcy Anders & Carole Brown Jay Atkinson Vicky & Stuart Becker Nikki Blasberg Mit Brahmbhatt Rochelle Brocks-Smith Scott Cheeseman Bora Chung Janette Chung Coty Chung Jacob Cohen Brady Countryman Rachel El Gamil Jake & Mona El-Gamil Shanna Finkel Paul Fredrich Brett Galloway Elaine Goldstein Thea Golub Alfred Gottscho (Aunt Reba & Uncle Alfred) David Hershenson Susan Hogle Vivian Hsiang Andrew Hyman Petra Jung Stephane Kasriel Irving Katz Mary Lee Keen Anne Kinsella Stuart Kramer Elana Krasnoperova Ruth Kurtz Stephen Rachel Lazar Kim Lee & The Lee Family Diane Lee Diane Leske Phyliis Levin Allen Lichaa Henry Lipman (Lipman Designs) Jason Lippe Roy Loring Justin Makeig Liza Massouda Lily Massouda Lorraine Metski Cheryl Miller William Onderdonk Aditi Parikh Jeevan Patil Steven Phillips Dr & Mrs Martin Powers Patricia Robbert & Stan Goldberg Aunt Amy, Uncle Jeff and cousins Allison and Daniel Robbert Harriet & Saul Rubin Sara Russell Jennifer Sager Magda Saina Samuel Shrauger Marc Strigel Jeffrey Sturman Marta The Motas’ Robert Tinker Michele White In Memory of Miles Bryce Sherman In Memory of Bobby Hammer Candace Branigan Robert Cagle Yvone Cataneo Galeen Driscoll Jane Fehr Susan Hess Mary Keifner Vicki Laird Susan Reeb Rebecca Rhodes Carol Schertz Paulette Stalter Wells Fargo Community Support Campaign United Way of Greater Waterbury Community Foundation of Central Illinois Employee’s Community Fund of the Boeing Company Allstate Giving Campaign Abbott Laboratories Network for Good GoodSearch Abe Rene Gail Baitx Brent Bellm Tina Davis Gary El-Gamil Audrey Guilaran Meg Hefner Mark Hodson William Dwyer Rony Keller Steven Miller Trent Myers Jennifer Pickett Fanya Seagull Amon Seagull George Shihanian John Stelzriede Ana Torres Machado Ian Townsager Jennifer Vidnansky-Lande Carla Webb Graeme Weir West Community Health Charities Robert Wetzel General Donations PAGE 20 VOLUME 20, ISSUE 1 In Memory of Ray Allotta Al Allotta In Memory of Tyler Matthews, beloved grandson of Susan & Buddy Glines Michael Holland In Memory of Pauline LaMorge and in honor of Christopher LaMorge Marguerite LaFrance In Memory of our son, Colin Luke Smith Jeanne Smith In Honor of Jospeh Lavelle Margery Bodenhamer In Honor of Aileen & Ken Sayce James Bowden In Honor of Jasmine Goldthorpe Loree Christianson Catherine Lavery Linda Therien Lesley Hutton In Honor of Makenzie Dougherty John Dougherty Betty McKnight In Honor of Tyler Buck and in Memory of Laurabell Stemen Rita Farris In Honor of Grace Gagliardi Peter Gagliardi & Caroline Garzotto In Honor of Brian Bill Gardner In Honor of the birth of Miles Bryce Sherman Thea Golub In Honor of our good friends Bob & Jill Hale Robert Hawes In Honor of Alexis Schnaderbeck’s 4th Birthday Mary McAdams In Honor of the CHARGE Syndrome Foundation Susan & Alex Roush In Honor of Nicholas Buono Stephen Ruocco, Jr. In Honor of grandson Ethan Susan Wolfe In Honor of Christian Roberts Bekkie Cobb Second Annual CHARGE It for CHARGE Donors In Honor of a refuah for our Shira Menachem Cohen In Honor of refuah shelaima to Shira Bas Leana and Ruchoma Bas Miriam Yehudis Shmuel RubinRoman Kaplan In Honor of Aaron Hiscutt & Family James Bowden Mike & Jeannette Derum Shari Esposito Laura Feagans Pauline .Blue. Gotham Susan Hiscutt Louise Jaskoski Linda Jones Robert Keith Coral & Cam McDonald Carol & Matt McGee Darren & Karen Segura Becky Satesina Doug & Susan Stroud Colonial Heights Middle School Peter & Vicky Hiscutt Kathy & Ray Feagins Melinda McQueen Josh & Kristen Smith Travis & Kristin Hiscutt In Honor of Aaron’s Education Team Susan Hiscutt In Honor of Abigail Northway Christine & Juan Carlos Fontaneda In Honor of Alexis Schnaderbeck Beth & Doug Brochetti In Honor of Brady Antaya Stacey Messier Winifred Annis In Honor of Cheye D. Smith On the Special Occasion of Kimi Swanson’s birthday Lynn Swensen In Honor of all the children with CHARGE syndrome who made me a better behavior analyst Laurie Denno In Honor of Baby Coco Dean & Liza Parke In Honor of “Princess” Finley Roth Linda Tibus Kristin Galan Amanda Marshall Amy Schmitt Ruth Baumgratz Karim Bandali Lesley Breitenbach Glen Christophersen Jaime Condo Lynne Gapsis Marie Keeley Melissa Kincade Pat Koclanis Joe McKernan Kristine Moore Kimberly & George Moran Lisa Pawelczyk John Vlajkovic Christine Weber Brian Kirk Paula & Scott Norkus Annie Cue Jennifer Stiles Jiang Qiu Alida Zamboni Thomas & Janice Boylan Anne Pease John Bird In Honor of Cari Miller & Family Cari Miller In Honor of Charlotte Cosenza’s goal Lenore Robustelli In Honor of Erika Feather Mark Mills PAGE 21 CHARGE ACCOUNTS THANK YOU FOR YOUR GENEROUS SUPPORT OF THE CHARGE SYNDROME FOUNDATION In Honor of Cheyenne Brittell Georgette Morales Lin Anderson In Honor of the great people at the CHARGE Foundation Elizabeth Breadon In Honor of David Sirota & Family Dawn Cohen Larissa and Gary Flom Dora Iskalo Andrea Kimmelman Rosa Scola Jodi Eisner In Honor of Ethan Wolfe & Family Paul Berkowitz Richard Busick Julie & Marc Machtinger Jason Wright Michael & Susan Zelik Peter Moroh Wendy O’Kane Joseph Sorce Daron Romanek Neil & Naomi Arnold Ray Roman In Honor of Eve Layla Ali Tracey & Luis Calderon Danielle Jefferys Geoff Spilar Natalie Kemp Danielle Parker In Honor of Halyn Jones Melva Strang-Foster In Honor of Ami’s beautiful little girlfriend Rebecca, Gil, Nava and Ami Feldman In Honor of Jim Dever Rick Bunn In Honor of Joel Saruski & Family Michael & Stephanie Gilfarb Loly Acuna Jennie & Jeff Bernstein Jennifer Enslein Joyce Herman Karen Saruski Russ & Jessica Wige Vivian Mechaber Carol & Jaime Suchlicki Tia Helen & Tio Bernie Broide In Honor of Joshua Kurby Kelly Faulkner Rosalie Kurby In Honor of Justin Murray Bob Benn Pam Dowd Bob & Sally Ells Nicole Hanchay In Honor of Kennedy Weir Lenna McNeill Joey Ann Baird In Honor of Kristin Ogan Wayne & Ruth Metz Gary Young Darla Northrup-Tippitt In Honor of Makenna Susil Fritzi Gibson In Honor of Gracie Swann Alison Burt & Lindsey In Honor of one of my favourite little patients Jaime Viau In Honor of Shira Schwartz & Family Marina Makovoz Marina Oganyan Azriel Novograder PT Lisa Pollack In Memory of Glenn Horne Jane Horne In Honor of Super Girl Alexis Catherine Rose In Honor of Taylor Shott & Family Sam Schultze Carol Bonaccorso & friends at Tradition Bank David Ball Shirley Bracksieck Rebecca Underwood Amanda Canon Jonni Webb Gail Stolzenburg Richard Smith Marilyn Small John & Bonnie Shott Thomas Shacklett Beth Nightingale Jennifer Nguyen Virginia Mosley Greg & Patti Mendez Judy Stienecker Kimberly Griffin Regina Danley Ray Crosby Paul & Kara Conrad Holly Chervnsik Bonnie Cerny Joe Belgara Michelle Bailey Sarah Spruill Tim Guhlin In Honor of the spirit & strength of children with CHARGE everywhere Lisa Jacobs In Honor of Trey Chatham Sandy Chatham In Honor of Vivian’s teachers at JWPOSD: Janet, Alicia and Sayard Hannah Maniago In Memory of George E. Robshaw Marylou Kivler In Memory of “Mucca” (Sharon Chatham’s grandmother) Dawn McElhaney In Memory of Miles Bryce Sherman Karl von Brockdorff William Croll Carolyn & David Gordon Richard Gottscho Isabelle Guis Carol Hollander Brian Mansfield Adrienne McCallister Gerald Smith Rachel Tyler Rosalyn White In Memory of Richard W. Baumgratz Mary Ann Baumgratz In Memory of Ronald Wynne The Executive Board of the CHARGE Syndrome Foundation On the Special Occasion of Alexis’ 4th birthday Bridget Butler On the Special Occasion of Hanukkah Debbie & Greg Lehmen On the Special Occasion of Kenneth Sayce’s 90th Birthday Ken & Aileen Sayce In appreciation of Paul Koppel Karen Kaunitz In Honor of Jacob Hartshorne Alexander Scotford John & Ruth Wynne Second Annual CHARGE It for CHARGE Donors PAGE 22 CHARGE ACCOUNTS In Honor of Maxwell McKinley (Mighty Max) Suzanne Holman Amy McKinley In Honor of Miles Bryce Sherman Alissa Reindel In Honor of Michael Kruger Cheryl Kruger In Honor of Matt’s Bar Mitzvah Leonard Stanger Matthew Stanger In Honor of Megan Stanger & Family Barbara Bernard Robert Cohn Donald Conklin Barbara King Ellen Matz Shoshana Chazen Michele Lantow Gregory Kadair Paul Koppel Tasha & Charley In Honor of Pam’s work with children and their families Linde D’Andrea Second Annual CHARGE It for CHARGE Donors Having More Children We are still looking for your stories about conceiving again after having a child with CHARGE syndrome. We are looking for your stories about having or not having another child after your child with CHARGE. What influenced your decision? Did you have another child or decide not to? We would love to hear from as many parents as possible. Topics of Interest to our Readers We would love ideas from our readers about what issues or topics they would like explored in future newsletters. CHARGE In the News Have you seen a great article about someone with CHARGE or about CHARGE syndrome itself in the news (either online or in a newspaper/magazine)? Send it along! Celebrating Accomplishments Do you have a story about yourself or your child that you would like to share? A story they wrote or a picture they drew? Send it to me with a picture if possible so we can share in you or your child’s accomplishments. Please send any stories and pictures to lisa@chargesyndrome.org. Upcoming Newsletter Topics 141 Middle Neck Road Phone: 516-684-4720 Sands Point, NY 11050 Toll Free: 800-442-7604 USA Fax: 516-883-9060 Annual Membership Lifetime Membership Family $25 Silver $250 Professionals $40 Gold $1,000 Platinum $5,000 Diamond $10,000 Email: info@chargesyndrome.org Visit us on the web: www.chargesyndrome.org CHARGE Syndrome Foundation, Inc. SPRING INTO ACTION!!! There are many ways to help the Foundation reach its goal of raising more than $100,000 and earmarking another $50,000 for research and education. Our Second Annual Charge It for CHARGE campaign has raised over $55,000. If each of our members joins the campaign we can exceed our goal and put even more resources toward research and education. In addition to the on-line fundraising, spring is a wonderful time to plan an event. Whether you like to run, walk, swim, golf, bike or just get to- gether with friends, you can host an event that interests you! Please con- tact our fundraising chair, David Wolfe at david@chargesyndrome.org with any ideas or questions. Let’s make a difference for our kids and our families.