9th International Costello Syndrome Family Forum

 9th International Costello Syndrome Family Forum July 14‐19, 2015 DoubleTree by Hilton Seattle Airport Hotel 18740 International Blvd., Seattle, Washington 98188 USA 1.206.246.8600 The following pages will help you prepare to complete your online registration form. If you will take time to read through this information and think about the parts of the conference you want to attend or participate, the registration process will go much easier, especially if this is your first time attending. You may even want to print it out and make notes to use as you complete your online registration. I would like to ask you to go ahead and begin your registration as soon as possible, even if you cannot complete it. This will help me gather the information I need as soon as possible. You can save the registration at any time and come back to complete it or pay later. I highly recommend that you begin the registration when you are not in a rush or distracted. Under Registrant Type, everyone (except doctors) will be selecting Families. If you skip over something that should have been filled in, it will tell you the registration is incomplete and highlight in red the questions that need completion. Just scroll through and look for items in red. (There are a few highlighted instructions in red also.) If you are running out of time, you can save the registration and return to finish it later. You may also return and make edits if you change your mind about a meal or attending an activity until June 15. It is very important to note that the early bird registration rate expires at midnight on May 15, 2015 Eastern Time. It will then automatically change to the regular rate. Registration must be complete, which includes payment, before the rate expires to take advantage of the reduced early bird rate. Here are some deadlines: May 15, 2015 Midnight Eastern Time…………………………Early Bird Rate Expires May 31, 2015………………………………………………………………Deadline for CSFN to receive funds to count toward 2015 Forum Incentives (Mail early!) June 15, 2015……………………………………………………………..Deadline to Register for 2015 Forum I hope you like the new registration form. It gives you a lot of information and gathers a lot of information that will provide reports to help us coordinate activities with the hotel. It would help if you could register as early as possible. If you have questions, please email me and I’ll be glad to help you. See you in Seattle. Sandra Taylor, President & Conference Coordinator
Page 2 of 9 INFORMATION TO HELP YOU COMPLETE THE REGISTRATION ____________________________________________________________________________________________________________________________________ TUESDAY, JULY 14, 2015 – NEW FAMILY ORIENTATION/ WELCOME RECEPTION _____________________________________________________________________________________________________________________________________ New Family Orientation If you are attending the Family Forum for the first time, please make plans to attend our new family orientation on Tuesday afternoon at 4:30pm. You will have an opportunity to meet other families and Board members, review the schedule and ask questions. This will get you started off with the information you need to gain the most from the days ahead and feel right at home with new friends. Welcome Reception and Registration Our official welcome to everyone, this gives us an opportunity to introduce the Board members who will give you important information on the days ahead. You will register and pick up your conference packets and name badges. We’ll have some drawings and prizes, and recognize some very important people. And of course, refreshments will be served! _____________________________________________________________________________________________________________________________________ WEDNESDAY, JULY 15, 2015 – RESEARCH & MEET THE EXPERTS _____________________________________________________________________________________________________________________________________ Breakfast is included with your registration. Research You will have the opportunity to participate in research that has the potential to not only help your child but also help others diagnosed with Costello syndrome now and in the future. Imagine! What you do this day could have a significant impact on another child’s life and his or her entire family. However, the choice is entirely up to you. Each researcher will require that you review and sign a consent form for their research. You may ask questions before the research is done so you are fully informed. You are free to opt out at any time. Speak with an Expert You will also have the amazing opportunity to speak with an expert on Costello syndrome and briefly discuss the issues on your mind. Remember that they are not the treating physician for your child. They are sharing their expert knowledge on the topics you wish to discuss so come prepared with your top questions about Costello syndrome. Once everyone has made their selection of both researchers and experts, a “Passport” will be made with all your appointments and included in your registration packet. Research Selections 1. Clinical and Molecular Investigations Dr. Karen Gripp, Lead Researcher and team members, Dr. Kathryn Chatfield (Cardiology); Dr. Dan Doyle (Endocrinologist); Dr. Mihir Thacker (Orthopedics); and Dr. Nicole Weaver (Geneticist collecting information on 16 and older.) Page 3 of 9 Purpose is to understand Costello syndrome and related disorders that affect the individual. The researchers will talk to the family about the medical history and ask them to complete a questionnaire. They may ask for a spit sample. You will see each of the doctors separately. They may request medical records. 2. Longitudinal Study of Development in Costello Syndrome Dr. Marni Axelrad, Lead Researcher; Dr. Jennifer Katzenstein; Eric Highley, Assistant Purpose is to study longitudinal development of individuals with Costello syndrome. The researchers will use standardized assessment measures with affected individuals and standardized interview and questionnaires with parents/guardians. (This will continue through Thursday but appointments are not made.) 3. Developing 3D Craniofacial Morphometry Data and Tools to Transform Dysmorphology Dr. Ophir Klein; Elizabeth Beals, Assistant Purpose is to better characterize Costello syndrome including facial features, and eventually develop a system to help physicians diagnose these disorders earlier and more accurately. They will gather information and take about 12‐15 photos. 4. RAS Mediated Tumorigenesis in Costello Syndrome Dr. Keith Choate; Jonathan Levinsohn, Assistant Purpose is to better understand the mechanisms involved in RAS‐mediated cancers. They will need a saliva sample, photographs and two skin biopsies. They will use EMLA for one hour to numb the skin or, if preferred, an injection of lidocaine with epinephrine. Supplies to care for the sites for 7‐10 days will be given. Meet the Expert Appointment Selections We are so fortunate this year to have so many experts available to you. Remember that these doctors are not the treating physicians for your child, They are sharing their expert knowledge on the topics you wish to discuss so come prepared with your most important questions related to Costello syndrome. Following is a list of the experts who have agreed to be available to speak with our families. You will be asked to tell us how many experts you would like to speak with, if any, and to number them in order of preference. Once everyone has registered, this will greatly assist our coordinators in scheduling the appointments for all the families. We cannot guarantee you will speak with your first selection, but with so many wonderful choices, you will be sure to learn something new! •Dr. Bronwyn Kerr and Dr. Emma Burkitt‐Wright, Genetics •Dr. Kate Rauen, Genetics •Dr. Suma Shankar, Ophthalmology •Dr. Dawn Siegel, Dermatology •Dr. David Stevenson, Genetics _____________________________________________________________________________________________________________________________________ Page 4 of 9 THURSDAY, JULY 16, 2015 – FAMILY DAY _____________________________________________________________________________________________________________________________________ Breakfast and lunch are included with your registration. This is a relaxed day with a few activities planned for the family. We have a fun craft fair right after breakfast. Maybe Mary with do some Yoga or relaxation techniques with us sometime during the day. There will be time to relax by the pool and visit with old and new friends. Who knows what else might be planned! You may want to take a nap or skip it all and go see some of Seattle’s waterfront. NEW! In the evening we have something new for our adults to visit and share experiences in a relaxed setting. Just for the men we have a Guys’ Man Cave from 6:45pm – 9:00pm and dads, male guardians, close relatives and friends are invited. Immediately following will be the Ladies’ Mix & Mingle where all the moms, female guardians, close relatives and friends are invited from 9:15pm to 11:30pm. _____________________________________________________________________________________________________________________________________ FRIDAY, JULY 17, 2015 – MEDICAL LECTURES & OTHER PRESENTATIONS _____________________________________________________________________________________________________________________________________ Breakfast and lunch are included with your registration. This day is packed with information from our medical experts from a full range of topics. Child care is provided for those attending the lectures as children are not permitted in the lecture rooms. NEW! This year you will be able to attend every 30‐minute lecture with the exception of one time when we have scheduled two lectures with the topics geared toward younger or older individuals with Costello syndrome. You won’t have to miss anything. It will be a fast‐paced day with some talks back‐to‐back. Hold on to your pens and notebooks! Lectures Costello Syndrome – Understanding Why it Is the Way It Is Katherine Rauen, MD PhD Orthopedic Manifestations of Costello Syndrome Mihir Thacker, MD The Eye and Vision in Costello Syndrome Suma Shankar, MD Skin Care Guidelines for Costello Syndrome – Tips and Tools Dawn Siegel, MD Cancer Risks in Costello Syndrome Bronwyn Kerr, MD Cognitive Skills and Behavior in Costello Syndrome: What we Know Marni Axelrad, PhD ABBP Finding Hope and Joy in Plan B Sandra, Larry & Jill Taylor Update on Clinical Research: Brain Abnormalities, Rare Mutations & Ongoing Work Karen Gripp, MD The Heart of Costello: Cardiovascular Features and Research Opportunities Kathryn Chatfield, MD Growth Hormone Use in Costello Syndrome: Are the Benefits Greater Than the Risks? Dr. Daniel Doyle, MD Costello Syndrome in Adulthood: What You Need to Know Kathryn Nicole Weaver, MD Vitamins, Herbs and Supplements: What Do We Know about David Stevenson, MD and Alternative Therapies in Costello Syndrome? Chiara Leoni, MD RASopathies Symposium Evening Poster Session/Desserts 8‐10pm Page 5 of 9 All families, doctors and researchers are invited by the Symposium to celebrate in the opening event. For the first time, posters by families will be included. For Costello syndrome, the presenters will be the family of Kelsi Moore represented by Tammy, Johnny & Kelsi Moore and the family of Daisy Nimmo represented by Stephanie Nimmo. Please show your support by visiting their poster station to check out their displays. There will also be posters by cousin syndrome families ‐ CFC, Noonan and NF‐1 along with the scientific posters. You won’t want to skip dessert this evening! _____________________________________________________________________________________________________________________________________ SATURDAY, JULY 18, 2015 – WORKSHOPS, FAMILY DINNER/DANCE & RAFFLE _____________________________________________________________________________________________________________________________________ Breakfast and lunch are included with your registration. Today speakers are brought in on topics that affect aspects of everyday life. Child care is provided for those attending the lectures as children are not permitted in the lecture rooms. Throughout the day, Rick Guidotti will be snapping photos throughout the child care rooms. Rick, a former fashion photographer, has a passion for finding beauty in genetic diversity. He has been to our Forum previously and we are excited to have RASopathies sponsor his return. We wrap up the evening with our fabulous fun dinner dance and raffle. If you want to invite guests, you will be able to purchase tickets. There are only a limited number of tickets available due to the size of the room. Keegan Johnson – The Unstoppable Charity Keegan Johnson is a dynamic speaker with a moving story to motivate us and help us fulfill our dreams. This session is for Costello conference attendees only. You will be excited about the ideas he brings and leave the session energized. (This is different from the later session on fundraising for both Costello and CFC families.) We urge you to sign up to attend this important session where some our families will participate. Who knows – you may win a prize! Workshops Topics Genetics 101 (for CS Forum Families only) Deborah Leach Scampavia, MS Social Security: SSDI and Job Training Kirk Lawson Feeding and Sensory Through OT Christiana Schadegg Fundraising – You Can Do it! Keegan Johnson/Judy Doyle Social Skills & Sexuality: An Open Discussion? Robbie Rigby Behavior Problems and How to Cope Melinda Wolford, PhD Assistive Technology Marsha Threlkeld Getting Ready for a Meaningful Life Cathy Murahashi _____________________________________________________________________________________________________________________________________ SUNDAY, JULY 19, 2015 – SLIDESHOW, CSFN BOARD MEETING, SYMPOSIUM SUMMARY _____________________________________________________________________________________________________________________________________ Rick Guidotti Slideshow From 9‐10am, Rick Guidotti will be presenting a free slideshow of the photos he took on Saturday at the Symposium, and families are invited to attend. Sponsored by RASopathiesNet for the Symposium. CSFN Board Meeting Page 6 of 9 Everyone is invited to the Board Meeting and election of officers beginning at 10:15 am. We will review the conference budget and program, and are open to comments and suggestions. Symposium Summary – Costello Syndrome This morning from 11:30 – 12:30 a panel of our experts will give us with a summary of the talks presented at the Scientific Symposium. This informal session will bring you the very latest information in research. Since there is no childcare, you may bring your children but we ask that you to step outside with them if they become restless or irritable so they do not disturb others. ____________________________________________________________________________________________________________________________________ MEALS _____________________________________________________________________________________________________________________________________ Registration Meals are included in your registration fee for the conference. On your registration form, you will be asked to enter the number of people in each age group joining us for each meal. Please carefully consider each day whether you will be at the conference or go off‐site. We want to be sure fundraising dollars are not wasted on uneaten meals. Here is a worksheet that you might use to help you in your planning. Adults 13 & up Children 7‐12 Children 0‐6 Wednesday, July 15 Breakfast Thursday, July 16 Breakfast Lunch Friday, July 17 Breakfast Lunch Saturday, July 18 Breakfast Lunch Dinner/Dance Page 7 of 9 Special Dietary Needs You will have a place to enter any special dietary needs for a registrant such as soft or pureed foods, Vegetarian foods, or to enter other specific needs or allergies. We have to notify the hotel in advance to have these meals prepared or there is an additional charge. _____________________________________________________________________________________________________________________________________ MISCELLANEOUS _____________________________________________________________________________________________________________________________________ Items for the Thursday morning craft fair and Saturday night raffle may be turned in at the Reception Desk anytime on Tuesday when it is open. Items should be “packable” as many people are flying and will be putting them in suitcases. We will ask you to let us know if you plan to bring some for either the Thursday craft fair or the Saturday night raffle so we can plan accordingly. We prefer that you stick to your commitment, but we understand that you may change your mind later. Don’t let that keep you from bringing something and we aren’t keeping tabs if you don’t. We just like to have an idea of how large a room we need and how many tables to set up. _____________________________________________________________________________________________________________________________________ VOLUNTEERS NEEDED! _____________________________________________________________________________________________________________________________________ We can’t do it without your help. Please give some of your time at the conference to help things run smoothly. If everyone does a little, then no one has to do a lot! We have a variety of jobs for volunteers to fill: the Welcome Desk, child care, help in the Clinics, passing out forms, etc. There will be a place to fill in your name and email address and our volunteer coordinator will contact you to find a place that fits what you would like to do. A gift of a little of your time during the conference would be greatly appreciated. _____________________________________________________________________________________________________________________________________ ATTENDEE DIRECTORY RELEASE _____________________________________________________________________________________________________________________________________ At each conference, we compile a list of the families attending and share it only with the families at the conference in print form. If you want to be on the list and receive a copy, you will have an opportunity to check yes and a copy will be in your registration packet. If you do not check that you agree, you will not be on the list or receive a copy of the list. _____________________________________________________________________________________________________________________________________ RELEASE OF LIABILITY/USE OF PHOTOGRAPHS _____________________________________________________________________________________________________________________________________ There is also a release for the photos we take around the conference that we use in preparing pamphlets, forms, registrations, on our website, closed Facebook page, etc. Sometimes they are taken in groups like in the dining room or a talk and sometimes individual photos. Please take time to read the Release on your Registration Form. There will also be a separate release at Registration for the photos that Rick Guidotti will be taking. This will allow CSFN and RASopathiesNet to use them as outlined in the release. _____________________________________________________________________________________________________________________________________ Page 8 of 9 REGISTRATION FOR ATTENDING THE FAMILY FORUM _____________________________________________________________________________________________________________________________________ Everyone attending the sessions or eating a meal must register. There is no partial registration. Payment must be made for registration to be complete. There is no paper registration – all registration is done online. ** If you think you qualify for incentive discounts, please contact Sandra Taylor at Sandra@CostelloSyndromeUSA .org before you complete your registration payment online to receive your discount code. Early Bird – Registration and payment must be submitted online by May 15, 2015 6 years and under Free 7‐12 years old $50 13 years and older $110 Person w/CS Free Regular Registration – Registration and payment submitted on or after May 15, 2015 6 years and under Free 7‐12 years old $85 13 years and older $180 Person w/CS Free 2015 Fundraising Incentives for Families $500 1 free adult registration $1,000 2 free adult registrations and 1 free room night $2,500 2 free adult and 2 free children registrations and 2 free room nights $5,000 6 free registrations (2 adult, 2 children, 2 extra), 3 free room nights, free childcare or CS lounge for 2 people, and a $50 Hilton HHonors gift card $7,500 7 free registrations (2 adult, 2 children, 3 extra), 4 free room nights, free childcare or CS lounge for 2 people, and a $75 Hilton HHonors gift card $10,000 8 free registrations (2 adult, 2 children, 4 extra), 5 free room nights, free childcare or CS lounge for 4 people, and a $100 Hilton HHonors gift card $12,500 8 free registrations (2 adult, 2 children, 4 extra), 6 free room nights, free childcare or CS lounge for 4 people, and a $150 Hilton HHonors gift card * Free room nights are only for rooms at the DoubleTree by Hilton Seattle Airport hotel in our block up to a $129 per night value ($147 after tax) and are not transferrable to other families. **Free registration and free childcare is not transferrable to other families. Childcare is only for immediate family members. ***Only one incentive level applies per family per affected individual with Costello syndrome. _____________________________________________________________________________________________________________________________________ EXTRA TICKETS FOR THE SATURDAY NIGHT BANQUET/DANCE _____________________________________________________________________________________________________________________________________ Occasionally a few people would like to invite others to attend the Saturday Night Banquet. You may purchase tickets for them with your registration – Adults (13 and older) are $38 and Children (ages 7‐12) are $19. There is no charge for children ages 0‐6 but we ask that you “buy tickets” for them as well so we will have a seat for them. You do not need to purchase banquet tickets if you have registered as Saturday night is included in your registration free. Tickets are limited. _____________________________________________________________________________________________________________________________________ Page 9 of 9 REGISTRATION FOR CHILD CARE – Camp Ras, Teen Time & CS Lounge _____________________________________________________________________________________________________________________________________ Child care is provided for the individual with Costello syndrome and siblings on Friday and Saturday at a small fraction of the actual cost so that caregivers may give their undivided attention to the information presented at the sessions. Children are not permitted in the sessions, and caregivers electing to use child care are required to attend the sessions. The fee is the same for one or both days. Please note that we may need to adjust children from one age group to another depending on the number of children who register. The CS Lounge is only for Adults with Costello syndrome and siblings may not attend. Camp Ras is for ages 1‐11. Teen Time is for ages 12‐17. CS Lounge is for age 18 and up. Children are picked up by parents to enjoy lunch with their families on both days. The children in Camp Ras and Teen Time are close by the lecture rooms in case a parent is needed. The CS Lounge will be in a suite in the Tower. _____________________________________________________________________________________________________________________________________ ONE MORE THING…… _____________________________________________________________________________________________________________________________________ RASopathiesNet is sponsoring three events during the Family Forum that they would like for you to register for on their website to help them with their planning. If there is room, you may still attend even if you do not register. These three free events have been mentioned in this document: •Thursday night Dessert/Poster Session •Sunday Photography Presentation by Rick Guidotti •Sunday Costello Syndrome Scientific Symposium Summary by our Researchers (adults only, no childcare) To register for these three events, go to https://rasopathiesnet.org/2015_registration/ Select RASopathies Affected Person/Family Member and complete the registration form.