Educational, Inspirational, Energizing, Entertaining....
The 2014 National Convention in Garden Grove, CA was all of these and more.
Thirteen hundred members of the WSA community from all around the United States and several other countries gathered in July for 4 days of educational programming, friendship, peer support and more at the WSA’s 16th biannual convention. Following the convention, more than 2/3 of attending families completed a survey designed to help us learn which sessions were most valuable, what was missing, and how we can make future conferences and conventions even better. In their words:
“The hotel, staff and location were also terrific. Above all, the opportunity to meet with leading professionals and connect with other families is invaluable.”
“I learned so much more. Now I know new things I need to discuss with Megan’s doctors. Megan is 5 and she said it was the best! So fun!”
[the convention was] “absolutely worthwhile and so crucial to my child's health and learning, but most importantly his social, emotional health. He has a new foundation; a new view of himself. He connected to so many others with Williams Syndrome building confidence and friendship simultaneously. A very big thank you to everyone on the board and the research program for putting on a stellar convention/reunion for all of us in the "Williams Family Community" worldwide!”
“I didn't expect to get the keynote speakers who were wanting to motivate and escalate us parents/caretakers for the journey. An unexpected pleasure. But my most favorite was the professional quality of the sessions. The information we came home witch surpasses all our expectations. Thank you!”
Great ideas for our 2016 Convention in Columbus, Ohio include:
- More hands on advice
- Sessions offered twice as they often conflict with other great sessions
- More formalized networking opportunities. The breakout session for parents with preschool-age children was wonderful. Many of us commented that we would have liked to have the opportunity every day – it could be as simple as including in the program a note that every day at 4pm, parents can meet at the hotel bar or in a particular conference room for networking.
- Hold a WSA Town Hall / Stakeholder Forum. Many of us are very interested in better understanding how the WSA functions, its leadership, its funding priorities, and its goals for the future.
- Fewer keynotes and more breakouts
- Continental breakfast needs to be a little more varied and kid-friendly
- It would be very helpful to have presentations available digitally - The conventions I have attended in the last several years have an APP or website that allows for access to any presentation - this makes sure that last minute changes or presentations are available and we do not have to carry home a large binder. It also allows for announcements to be sent that way and even some have social interaction - such as contact information - message boards, etc
As an organization we strive to make each event better than the one before it... your suggestions and volunteer support are critical to helping us reach our goals. Many thanks to each of you who participated, and offered your suggestions and help for the future. Together we can make the futures brighter for our sons and daughters, relatives and friends with Williams syndrome.
If you were not able to attend the convention, you can still listen to an MP3 recording of each session and view (where available) the accompanying power point presentations. The cost for the entire collection of downloadable MP3 recordings is $60. Go to: http://www.williams-syndromeonline.com/
Of Special Interest from the Research Community....
Each national convention is preceded by a 1-2 day professional conference – Members of the scientific community from the US and abroad gather to present “briefs” on their latest findings. It is interesting to me that scientists prefer 10-20 minute presentations with 5 minutes for questions, while as parents, many of us think that 90 minutes on a topic is barely enough. There must be something to it – TED talks also follows the “brief” format – and think how many extra topics we could all be exposed to – but that’s a discussion for the next convention committee. Let’s talk instead about “what’s hot” in Williams syndrome research.
There were 20 presentations at this year’s meeting covering topics in the areas of genetics, neuro-cognition and brain development, medical issues, behavior and language and cognition. Some of the key session topics included:
- Tracking Brain Development in Social-cognitive Networks in Williams Syndrome throughout Childhood and Adolescence
- Profile of Neuropsychological Functioning and Relation to Cognitive-motor Interference and Inhibitory Control in Williams Syndrome
- Trust Reasoning Correlates with Anxiety in Williams Syndrome
- Ventricular Hypertrophy on Electrocardiogram Correlates with Obstructive Lesion Severity in Williams Syndrome
- Relations between Emotion Regulation and Adaptive Functioning in Children and Adolescents with Williams Syndrome.
- Major Adverse Cardiovascular Events in Children with Williams Syndrome Undergoing Cardiac Surgery – Major adverse events are common in WS following left-sided surgery, but less frequent after isolated RVOT surgery. Patients with concomitant left and right-sided obstructive lesions have significantly increased risk for MACE (Major Adverse Cardiovascular Events)
- Vascular Stiffness is a Contributor to Abnormal Neurodevelopment in Williams-Beuren Syndrome - Studies to date have shown statistically significant differences in neurobehavioral testing parameters between Eln+/- and WT animals. We also see histological abnormalities in brains taken from Eln+/- mice, including increased expression of Glial Fibrillary Acidic Protein (GFAP) in perivascular astrocytes in multiple regions of the brain. These findings suggest that abnormal blood flow leads to perivascular damage, which may contribute to differences in neurodevelopmental outcome. Treatment studies are under way to investigate whether targeted treatment of vascular stiffness and elastin insufficiency in these mice can improve both the histological and neurobehavioral abnormalities seen in this model.
- Hypercalcemia in Williams Syndrome – this study demonstrates that the prevalence of hypercalcemia in young children with WS is 48%, much higher than previously documented. The etiology of hypercalcemia is still unknown. Data suggest that more frequent monitoring of calcium is indicated in young children with WS.
- Copy Number of the General Transcription Factor (Gtf2i) Determines Neuronal Maturation in Williams Syndrome and 7q11.23 Duplication Mouse Models - results suggest that TFII-I plays a critical role in neuronal maturation in the cortical region of the mammalian brain by affecting axon branching, a process that is essential for proper morphological development of neurons. Our findings also support the hypothesis that TFII-I regulates the cellular localization of the TRPC3 channel, and in turn regulates calcium entry in cortical neurons. Together our studies provide the first functional insight into the cellular mechanisms underlying the 7q11.23 syndromic disorders.
- Parent and Teacher Perspectives about Problem Behavior in Children with Williams Syndrome – Parent and teacher reports confirm that anxiety and attention problems, as well as social difficulties are especially common in children with Williams syndrome
- Sexuality in Individuals with Williams Syndrome: What Help is Needed for Parents? – This study highlights the need for early (pre-adolescence) and ongoing training on affectivity and sexuality for the parents of individuals with WS.
- Longitudinal Stability of Receptive Vocabulary of Children with Williams Syndrome: Multilevel Modeling of Performance on the Peabody Picture Vocabulary Test—4th Edition - On average, performance on the Peabody Picture Vocabulary Test declines 0.59 points per year from 4 to 17 years, although there were significant individual differences in the intercept and curvature parameter. Maternal education and nonverbal reasoning abilities were significantly related to the intercept.
- Development of Speech Production Accuracy in Children with Williams Syndrome- Articulation abilities of 5-8 year old children with WS ranged from severely delayed to average. The majority of children score in the borderline to average range, Speech-sound production ability is moderately to strongly related to single-word vocabulary ability, utterance length and proportion of utterances that were intelligible. The order of acquisition of developmental phoneme classes is consistent with that for typically developing children.
- (A)Musicality in Williams Syndrome: Behavioral and Neural Evidence - there are significant individual differences in musicality in WS and some individuals with WS meet criteria for having a musical disorder. Amusia may reflect an impairment in auditory-motor feedback or integration such that some individuals with WS, despite their auditory sensitivities, are unable to consciously translate musical training experiences into musical skills through use of auditory and auditory-motor feedback
For more information on current research into Williams syndrome and WSA research grants, call Terry at 800-806-1871
The Value of a WSA Camp Experience - Insights from Staff, Campers & Parents
Each summer, 160+ campers converge on Grand Rapids, MI for the camp & reunion weeks for school age, teen and adult groups. Each camp is different and each one is special in a different way depending on the “reporter”. Following are accounts of this summer’s camp weeks – from parents (young kids camp), staff (teen week) and young adults with WS (Reunion Week). Enjoy!
Whispering Trails Therapeutic Camp – Parent Insights
We first met Christi and Lydia Bethard in 2009 while planning for the 2010 National Convention in St. Louis. Lydia was just 5 year old. Two years later the Bethard's began coming to "little kids camp" (as we affectionatly call it in the WSA office) and they are now "seasoned" campers. Following are Christi's thoughts on the camp week.
Whispering Trails is the place to be (Bam)
Whispering Trails come along with me....
When we’re together, were in clover,
When we’re together, I’m shaking all over
SHAKE, SHAKE, SHAKE, SHAKE, SHAKE, SHAKE
That is the theme song for Camp. It will get in your head and circle there for days, and just when you think you have silenced it, you will quietly hear this tune somewhere in the back of your mind, and it’s back....bringing with in an ear to ear smile.
My daughter, Lydia, and I have been going to Whispering Trails camp for 4 years. The things that keeps us coming back aren’t the air conditioned cabins, the fact that I don’t have to prepare meals, or even the fantastic classes they offer...What keeps us coming back is the sheer acceptance - being totally and completely accepted, just as you are. This acceptance strikes me as so very odd. So unique. It is a place where people ask how you are, and then really care to hear your answer...camp is beyond amazing.
You bunk with 3-5 other parent/child teams in cabins which have 2 toilets and 2 showers. The meals are family style, the classes are mandatory participation, even from parents who attend – no “quiet observing” allowed. You will get your turn, and your child will be so proud of the way you played that instrument or sang or danced...they will beam when you fit into their world. This camp was so out of my comfort zone, but with the kids prodding, it has become perfectly normal, even for me, to dance from class to class, to sing my answer to them. And it is hilarious watching the other parents burst out of their “normal” to do it too.
Family style meals are fantastic. Lydia would always pick out where we would sit, usually with someone new. And then came that fatal meal, the dreaded one, “Mom, is it okay if I sit with my friends?” Lydia plopped down with a table full of kids and a counselor or two, leaving me to search for the table of the other ditched parents. Throughout the entire meal, Lydia kept giving me a thumbs up...not to let me know that she was good, but to make sure that I, in fact, was making it okay without her.
At camp, she is comfortable, at camp her world rules and I must adjust. I remember talking to a parent...pretty soon a child walks up, sings us a little diddy, does a little jig and moves on. The parent and I then went back to our conversation as if that was perfectly normal behavior. And at camp, it is normal...there is no need to explain, there is no need to hide or worry about what your child is saying. When your child goes up to an adult, you know that parent, or that counselor can field any question thrown at them. These are seasoned players, and you can relax, really relax and enjoy the craziness that is Williams syndrome. Camp is absolutely wonderful!!
The very first night, of our very first camp, this cute little girl with WS got up for her “15 minutes of fame” (each camper can perform one time during the week). She sang, and she sang sweetly enough, but when she was finished – at the time when everyone politely claps and the next person shuffles to the stage...yeah, well, that didn’t happen. What did happen was the audience EXPLODED. They cheered, they clapped, they carried on as if it was the most excitement they have had in their lives. And then the next child went up. He told “knock knock” jokes, and again, the crowd ERUPTS in laughter, cheers and claps. And as if that isn’t enough to fill your heart, if you are able to peel your eyes from the stage, just for a moment, and watch the parents of the performer, they too are shining, glowing - they know that their child is not only going to be accepted, but also congratulated beyond measure on their performance, no matter the skill.
This week of encouragement, of acceptance, of sheer joy is what keeps us coming back year after year after year, and each year our lives are that much richer!! I invite you to step out of your comfort zone and join us, you will be amazed!
The Connell-Donohue family has been a part of the WSA camps since Emerson (now 10 years old) was a baby. “Grandpa Dan” Donohue first signed on a counselor at our Music and Enrichment Camp, and a year or two later, Kelly Connell (Emerson’s Aunt) followed suit. And then, when Emerson turned 6, Kelly (first) and Kelly and Amy (Emerson’s Mom) in the year’s since, have attended the Therapeutic Camp each summer. Here is their story.
I never could have imagined the importance of Whispering Trails camp before I attended. As a parent, I was relieved that my sister was willing to take Emerson to camp the first few years. I was working and never thought of myself as much of a “camper” anyway. I wasn’t eager to share a cabin with strangers either. And I found that rather than being enthusiastic to meet other kids with Williams syndrome when Em was diagnosed, I found it difficult. Fast forward five years later… and nothing could deter me from spending those summer days at “Camp-cation,” as we affectionately have labeled it.
My niece, Emerson, was diagnosed with Williams syndrome when she was 1 day short of her first birthday. Like many families in this situation, we were overwhelmed and completely unfamiliar with the diagnosis. Two years later, I became involved in the Williams syndrome community. Emerson was too young at this point to attend so I became a counselor for the teen and adult camp. When Emerson was six, I was the lucky one who took her to camp. By that time, we had nicknamed Em, “The Hurricane”. Anything in her path would be destroyed in one fell swoop. She gave me the slip once and in five minutes was able to turn the art room into ruins. Another time, there was a professional band who had set up their instruments on the stage . The audience had gathered, and the silence in the room was suddenly interrupted by a loud BOOM. Emerson had literally materialized behind the drum set and the rest was history.
Camp has become so many things to us. Not unlike many children with WS, Em often tried to “give us the slip”, and was therefore never allowed to roam very far. She never could run around outside a fenced yard or go down the street on her scooter. The first hour we were at camp, Emerson had more independence than she had had in her lifetime. She had a safe space to hang out with other kids and run around. Instead of being at an arm’s length, I could see her playing across the campground or allow her to walk ahead and “meet me” at dinner. It gave her confidence and me a few minutes alone.
I found that with camp came a feeling of acceptance, something that we were not accustomed to. I never had to worry about Emerson being too friendly, too loud or having inappropriate behavior. Everyone understood her, even if they didn’t know her. There is a magnetic connection between the kids that is amazing to see.
Today, camp is something that is discussed all year long in our house. Emerson has made lifelong friends that I didn’t know would be possible. She looks forward to those days at Music camp more than Christmas and her birthday combined. For me, I am delighted by the support that I found. The “strangers” that I was not eager to bunk up with, have become dear friends. For the first time, I could tell stories about Emerson’s health, school, or home life without explaining all of the exhausting details necessary to understand it. I found people who could laugh with me about Emerson saying “hello” to the maniquin at the Gap or sneaking candy off the Gingerbread house at church. To know that other people are going through the same daily challenges that I am, is invaluable to me. I’ve also learned that the advice and information I can gather during our time together is invaluable. Sitting around our “grown-ups only” campfire late into the evening has become something that I look forward to all year long.
The helplessness parents feel initially when faced with the news of their child’s diagnosis; the shock, the disappointment, and anger can be overwhelming. As the daily challenges become a reality, reaching out to other parents who are in similar situations can help to alleviate some of the unknowns and the worry that parents of children with WS face daily. Whispering Trails Camp is one place where acceptance, understanding, and sharing the trials and joys of these children is never taken for granted.
I truly feel like Whispering Trails camp is one big, joyous family. Every time camp is over, I have a pit in my stomach, knowing that I have to wait a whole year for the magic to happen again. Who will I Boog- a- Loo with? Who will meet me at the camp fire? Whispering Trails is the place for me! It is the happiest place on earth and has given me a depth of feeling and emotion that has forever changed my life.
It turned out that the “camper” experience I had dreaded wasn’t so bad in my comfortable cabin with its air-conditioning and individual bathrooms. In fact, leaving my other kids at home, it was quickly evident that I would be able to relax and enjoy quality, one on one time with Emerson…and allow myself to slow down for a few days. I never could have dreamed that one “out of the way” camp ground in Michigan could bring such joy to both me and my daughter. The memories and experiences gained there each summer will always remain irreplaceable to us.
Music & Enrichment Camp - Thoughts from Staff Members
Camp is a very special, magical place. Each summer I know it will be an exciting adventure where we come together to laugh and to play, to make beautiful music, to learn and discover, and most of all to create new memories.
I love working with the campers. One of my favorite parts of each year is seeing how much everyone has grown. I also come to camp excited to see what individuals will learn throughout the week. As a teacher and mentor, I can honestly say that regardless of how prepared I am, the campers teach me more about how to best teach and work with them. This year, one of the goals for a young teen in my cabin was to work on brushing her hair, and then to be able to do it on her own. By the middle of the week I heard, “Look, I did it myself!” in the morning, and sure enough, she had succeeded in brushing her hair on her own. Seeing her face light up with the excitement of her success is one of my favorite memories from camp this year.
I love the campers’ honesty, confidence, their smiles and joy, and their support for each other. The campers are courageous, and sincere. I marveled as sometimes anxious campers climbed to the top of the rock wall and then flew down the zip line for the first time, while their friends cheered them on.
What do I love about camp? - I love seeing individuals demonstrate all of the things that come so naturally to them; how to help, support, care for, and love your friends.
I began my time at the Williams Syndrome Association Music and Enrichment Camp two summers ago in the role of a researcher. I was immediately welcomed into the camp community and decided that I had to come back the following year. This past summer I had the opportunity to return as a camp counselor. While parents frequently thank the counselors profusely at the end of the week for taking care of their children, what they do not realize is that working at Whispering Trails is more than a job—it is a privilege. There are certainly challenges one faces as a counselor (such as getting your campers to eat as much broccoli as possible while making it seem like fun), but overall the experience is incredibly rewarding.
Being a teenager is difficult. It is a time of negotiating relationships, figuring out who you are, and growing into the person you want to become. I love being able to act as a sounding board for the teens during this time of growth. I also love watching the teens try new (and sometimes scary) things, à la racing down the slip-and-slide or performing at Open Mic Night for the first time. However, what I find most rewarding about the Music and Enrichment Camp is watching the teens form a supportive and inclusive community. I frequently hear phrases such as “It's O.K.! You can do this!” when someone needs extra encouragement, or “I'm really proud of you!” when someone succeeds or tries something new. I look forward to camp all year long because when I am with this incredibly impressive group of young people I am constantly inspired to listen with greater generosity, demonstrate greater compassion, and have more fun. Needless to say, I am counting down the days until next summer.
Adventure Seekers Reunion – insights from the Adventure Seekers
Kate and Taylor are long-time WSA campers who have personally experienced all the growth and changes in the camp programs throughout the years. In fact, they both began their tenure as WSA campers at Belvoir Terrace in Lenox, MA about 15 years ago. This year marked the 2nd year for our “Adventure Seekers Reunion” for adults with WS ages 21 – 35. New this year, was a change in location from the traditional camp environment. This year’s program was held on a college campus, to help establish it as a true reunion, (instead of camp with a different program). As you will see, to the attendees, it is (and may always be) “camp”.
From Kate: For the most part, reunion was very enjoyable. I made many new friends, and reconnected with some old friends as well. There was one camper in particular who pleasantly surprised me. I have known this person for some time, and when we met, this person seemed very bitter and angry, and it showed. This year, the person was nice to everyone, and clearly had a better sense of the good things in life.
We did many fun activities, such as going to a minor league baseball game, spending the afternoon at a park, and of course the lake house. My favorite activity, however, was going to the carnival and watching the musical fountain in Grand Haven. The classes offered were also interesting. I took cooking, recreation, Circles, Self determination, and Skits. At the end of the week, we got to perform our skit in front of the other campers, which was a lot of fun. At first, though, the skit didn't seem funny, but once we got the joke, we had a blast making it our own.
There were two things that I found a little bit challenging. I was among the last campers to arrive, and the first to leave. This was hard because I would have liked a little more time, at least on one end. I know, however, that it was not my fault, so I was able to deal with it maturely. Also, I was not used to sleeping on a loft bed, so that was hard. As challenging as these situations were I knew I couldn't change them so I handled them as best I could.
Overall, camp was a lot of fun, and I hope the experience is similar next year.
From Taylor: I have been going to a WS camp since I was 13 years old. Camp has changed and been in different places over the years. Now that I am an adult, I really love Reunion Camp. When my parents pick me up at airport at the end of camp, I am already thinking about going back the next year.
Reunion Camp is special because we are treated like adults and get to choose our activities and outings. Each year of camp has been a little different. This year, for the first time, we stayed on a college campus, which I really liked. It was a new experience and it felt more independent. We also did different things this year. The Coast Guard festival was really fun. For a volunteer activity, we did a park cleanup. Last year it was a beach cleanup. Even those were fun because we were helping the community.
Going to Reunion Camp is my vacation away from my parents; and, it’s their vacation away from me. I think it’s important for everyone to have time away from his or her parents. It makes me feel more grown up and independent.
Flying by myself, and making a connection is a little scary, but I am getting more confident each year. And it’s definitely worth it because it gets me to camp. I can’t wait until next summer’s reunion camp!
If you’ve never considered the camp programs and your child is age 6 or older, we hope you will consider it in the future. The campers have a blast and we do too! Scholarships are available for all WSA camps and for all other camp programs throughout the United States.
Kevin Payne is just 19 years old – an age that for many means all-night parties on college campuses, hanging with friends, and enjoying that first taste of freedom and the sometimes “wild ride” that kids experience when they leave home for the first time. For Kevin – it is so much more. Kevin, like most kids, left for college in the September following his graduation, but the timing just wasn’t right and he decided to take some time off. While home in the following months, he had an idea – why not combine his athleticism and desire to travel, with support for his brother and all his friends with Williams syndrome. Kevin’s older brother, Jake (age 22 with WS) has always been a big part of his life. Kevin started volunteering at local WSA events and the National Convention before he was a teenager, and as early as 7 years ago, when he was interviewed for the WSA’s sibling video, he showed great compassion and concern for Jake’s future.
And so it was, that Kevin decided to join the WSA’s Williams Syndrome Awareness initiative – but not with a simple 3 mile walk. Kevin had something much bigger in mind... he decided to bike from coast to coast, (nearly 9000 miles), on a solo trip dedicated to Jake and supporting those with Williams syndrome. A donation page was set up where folks could honor Kevin’s efforts with a donation to the WSA. Kevin’s goal was $1000... and then $3000...then $5,000 and $7500, and last week Kevin surpassed $10,000 in donations to the WSA in his honor! Way to go Kevin!
But it’s not just about the donation; in fact the donations are simply a nice extra. The journey is so much more important. Kevin has already spent 5 months on his incredible journey, and so much has happened along the way. He set out alone back in April. He was on his bike and carrying some simple camping equipment with a plan to stop along the way and visit families of individuals with WS wherever their paths crossed. He would camp along the way in between those times, visit some of the country’s great landmarks and spread the word about Williams syndrome wherever he could. Kevin’s first “major” stop was in Folkston, GA where WSA member, Melissa Cook, pulled out all the stops and held a carnival in his honor. There were also stops to visit families in NC (Shively, Pursley), Alabama (Kelly), New Mexico (Emma), Palm Desert (Garbarini, Moore), and Las Vegas (Toia, Jacobs)...( just to name a few). Families helped to establish media contacts, hosted parties, provided warm showers and great meals etc. in Kevin’s honor. And finally a stop in Garden Grove, CA where true to form, Kevin spent the convention week volunteering in the toddler room! The kids LOVE him! He also had a great time introducing everyone to “Hitch”, a miniature Doberman who joined Kevin along the way in Oklahoma, and has been traveling in style and keeping him company ever since!
A few days into the convention, Kevin’s plans took another turn – he decided to RUN home. He and a friend worked out the details with a new, more northern route which was better suited to running for the return trip. His friend Dan agreed to meet him in Portland and accompany him for the return trip-Dan on the bike and Ken pushing a 70 lb. jogging stroller packed with gear and a special place of honor for Hitch. With an arrival back home in Maryland estimated for some time in November, they set out for the return leg, and as I am writing this, they have just crossed the border into Nebraska.
Kevin’s return trip has brought the beautiful vistas of the northwest (check out the photos in his blog), interesting accommodations (abandoned warehouses, the hay bales in a farmers barn, morning wake-up calls by sprinkler systems...), more great families to meet (Ericksons and Paslays as well as local folks simply interested in Kevin’s journey and willing to help), and personal accomplishments – Kevin recently completed a one-man marathon – 26 miles in under 2 hours and 45 minutes!
Along with many other families, I have been following Kevin’s journey and witnessing his growth along the way. Kevin’s journey and his special dedication to individuals with Williams syndrome have been featured in the media 11 times to date, and with each interview he is more poised, and knows a little bit more about Williams syndrome. With each family he has met, Kevin has come to realize that each of the individuals has their own special unique qualities. They also have the special, endearing personalities that have come to define Williams syndrome. And their families have the special bonds with each other and with everyone who loves someone with WS that are born from the unique qualities of their children.
At the WSA, we are extremely proud of Kevin’s personal journey and of all that he has done to help spread the word about Williams syndrome and support the WSA. Congratulations on all you have accomplished to date Kev – we look forward to your homecoming in November!