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September 2018





September 2018 Issue

Convention Highlights

Convention Volunteer Spotlights

Special Tribute to Dr. Ursula Bellugi

WSA Camp News


Regional Social Events

New Williams syndrome Children's Book

National Convention 2018 

Convention 2018 is “in the books” and by all accounts, it was a convention for the record books with great attendance and many new elements.  Nearly 1500 attendees took advantage of educational sessions, camp and adult programs, and special social events (the block party and the dance were hits!) as well as connected with friends from all over the country and the world. Thank you to everyone who attended, and a special thanks to speakers, volunteers and exhibitors, who contributed so much to the experience!   Included, here are just a few highlights from #SetSail2018. We're not sure we can top this one, but we're definitely going to try, so mark your calendars now for Convention 2020 – July 8-11 in Phoenix, AZ!

Keynote speaker, Michael Porath, founder of The Mighty was both inspiring and motivational. Mike is a journalist, and the parent of a child with a rare condition called DUP15q.  Shortly after his daughter was born, he decided to utilize his journalism and business connections to start The Mighty, an online community of inspirational personal stories. With humor and relatable dialogue and pictures, he shared his own powerful story from his daughter’s diagnosis to how far he and his organization have come. Mike spoke about the evolution of his five-step process, which helped him both as a father and an organizational leader for both DUP15q Alliance as well as The Mighty.  The five steps: Ask for Help; Just Say Yes; Show Appreciation; Embrace the Moments and Dream Big are all things we can relate to as we work to grow our own community of 
families and professionals with a connection to Williams syndrome.  Mike’s message that “People do not live to be great patients—they live to pursue their hopes and dreams,” resonated with families who noted
that “It’s good to hear from someone who ‘gets it’ and has done great things with his skill set.  What a great community he created.” 
Parents and caregivers participated in a daily array of engaging sessions (more than 60 overall!) on important topics including health issues and current research, education, socialization and justice, transition and housing opportunities. Daily “lunch and learn” sessions (new this year) provided opportunities for attendees to reserve a seat and have lunch with a speaker to learn more about specific topics and get additional questions answered in a small group setting. 
Outside the session rooms, Infants and toddlers were engaged on-site, school-aged children rode the water taxi across the harbor to an enriching camp, and teens and adults with Williams syndrome toured DC, visited museums and more. 
The Bee Strong Therapy Initiative, sponsored by the Rovinksy family, was a wonderful addition to this year's convention. Founded in honor of Christie and David's daughter Everly, the program brought therapy experts of all types (OT, PT, speech, aqua therapy etc.) plus sleep and special education specialists to Baltimore. In addition to the organized large group convention sessions and lunch and learn topics, the therapists provided private and small group evaluations, networking lunches, social events and even ai chi (pool-based yoga) for parents.  
One of our Canadian friends, Ariane Gagnon, mom to Arlette (pictured on the right) reported:  "We had the pleasure of taking advantage of an aquatic therapy session at the convention, as well as attending the "Putting the Fun Back in Aquatic Therapy" session. Since coming back from the convention, we have purchased a water exercise mat, as recommended by therapist Jane. Arlie uses it nearly every day and her balance has improved tremendously. Her core strength has improved drastically, as she shifts sideways to reach toys. We truly think aqua therapy has had a huge impact on Arlette, and we were able to learn about some techniques thanks to the convention. We are now seeking local aqua therapists to further Arlie's progress."

We also developed and utilized a mobile app at the convention. The app provided attendees with schedules, session pdfs, notifications, social feeds, exhibitor information and more on their mobile devices, and was well-received by attendees. The app is still available to use for reviewing session notes, to view speaker presentations (many more speaker presentations have been added since the close of the convention) or to view the amazing pictures everyone posted. There is also an album on Facebook: enjoy those photos here.
Thank you again to all who attended, spoke, volunteered and supported! For more information on conventions and regional conferences, and to order audio downloads of educational sessions, visit our convention page.


Convention Volunteer Spotlights

Julie Oglesbee: Infant and Toddler Program Chair

“I know it was a good experience if I cry on the last day, and I cried.”  
Julie Oglesbee, grandmother to seven-year-old Grayson (WS), first chaired the infant and toddler program for the Columbus convention in 2016. Since she lives in Ohio, she was a natural fit for the convention committee that year—and her experience working in schools as a classroom aide and having an early-childhood degree was perfect! Gathering feedback and notes from previous conventions—what worked and what didn’t—Julie worked with the WSA to create a program that would be excellent for our little ones and their siblings.  The best news for the WSA was that immediately following the Columbus convention, Julie signed on to chair the programs for the Baltimore convention (and also became a regional chair for the Great Lakes region).

Julie stresses that because this program is on site it’s imperative that it be exciting and not a “stuck in a room” experience. With the music therapists who came every day, the professional puppeteer, therapy dogs and rabbits, and an abundance of toys, snacks and attention from wonderful volunteers, her goal was met. 

Julie emphasizes that local families are essential to the program’s success, gathering toys and furniture, accepting and storing items delivered to their home prior to the convention, volunteering to help set up and tear down the rooms, and most importantly gathering local friends and relatives to volunteer throughout the convention.  Each of our programs for children with WS and their siblings is hugely important but none more so than child care for our youngest attendees.  Thank you for helping to ensure that our little ones were safe and happy throughout the convention, Julie!

Nora Beger, On-site Registration Chair

Nora Beger is a long-time convention participant.  Her oldest son Brett (WS) will be 29 next month and she has been helping with on-site convention registration and check-in since 2002, often at the helm, as she was this year.  Along with long-time convention volunteer Candy Phillips, and a strong crew of supporting volunteers, Nora keeps the lines short and the attendees well-informed at all times!

Nora has been a volunteer with the WSA since becoming a Board member in the early 90’s and has always been involved on a local level, helping to organize social gatherings and local conferences in Buffalo, NY and in the Philadelphia area. Like most of us, Nora first attended conventions as a parent at our meetings in Chicago and San Diego.  It wasn't long before she was helping at many more, including Grand Rapids, Dearborn, Long Beach, Anaheim, Columbus, and Baltimore. She remembers the early days, working with WSA staff member Anne Tipton on paper registrations.  This year, Nora quickly learned our new mobile system and trained her volunteers to ensure great results.

Registration is a critical position at a convention.  That is where everyone goes with questions of all types. Nora works in communications and we are thrilled to have her expertise in this important role to help ensure that our convention attendees have a good experience. Thank you Nora!  We know that everyone in good hands with you and your team “manning the desk.” 

Dr. Ursula Bellugi

After nearly forty-eight years at the Salk Institute for Biological Studies, Dr. Ursula Bellugi, special friend to the WSA, individuals with Williams syndrome, and the research community at large, has retired. The closing of the Laboratory for Cognitive Neuroscience last month has signaled the end of an era. 
Dr. Bellugi’s contributions to the research community were vast and her research on Williams syndrome has changed the future for our sons and daughters. The WSA will greatly miss partnering with Dr. Bellugi to solve the mysteries of Williams syndrome.
Thirty-five years ago, Williams syndrome was often characterized as the “cocktail party syndrome” – researchers seemed to feel that the most notable aspect of our children was that they were shallow – great at conversation openers like “Hi, how are you”!  “I love your dress,” or “you look beautiful tonight”! but with little ability for more meaningful communication. The balance of those early reports on Williams syndrome described “mental retardation” and many other limitations, with little or no mention of strengths; and gave parents of newly diagnosed children very little hope.
It wasn’t until we met Dr. Bellugi in the 1980s that the future began to brighten for those affected by Williams syndrome.  “Dr. B” pioneered the study of the biological foundation of language. In fact, she is regarded as the founder of the neurobiology of American Sign Language. Her work was the first to show sign language as a true language as processed by the brain. Through her studies at the Laboratory for Cognitive Neuroscience at the Salk Institute, she revealed a great deal about how the brain learns, interprets and forgets language. She was known to have an unquenchable thirst for knowledge –  constantly seeking new avenues for illuminating the ties between neural and cognitive functions.  
That endless curiosity is what first led Dr. Bellugi to Williams syndrome. She accepted the request of a parent to meet her child with Williams syndrome who had an unusual language profile. That meeting was the beginning of new research explorations for Dr. Bellugi. Her research began to enlighten us to the unique language strengths of those with WS, and it brought together experts in diverse fields to study the complex issues related to Williams syndrome. 
Part of Dr. Bellugi’s wonderful gift to the Williams syndrome community was that she brought families and scientists together. When Ursula first arrived at the Salk Institute in 1970, she was the only researcher there who studied people rather than the contents of a test tube or a petri dish. That alone was groundbreaking, but she pushed the limit even further when she began studying Williams syndrome in the early 80’s and invited several other scientists to join her studies, which were aimed at linking the brain, cognition and genetics.   She then insisted that those other scientists get to know Williams syndrome “up close and personal,” inviting colleagues to attend family gatherings she would regularly host at the Salk.  As a result, these scientists who were looking at brain neurons, or a slice of brain tissue, or stem cells of children with Williams syndrome, began to take a new interest in Williams syndrome and look at their slides with a much more personal view.  
Dr. Bellugi has published more than 250 papers and was inducted as a member of the highly prestigious National Academy of Sciences in 2008. But more importantly to us, she has met and included nearly 1100 individuals with Williams syndrome in her research to uncover clues about the social brain. In the process, she has become so much more than just a scientist to us.  As one of her colleagues put it, she is both a pioneer and an inspiration. Dr. Bellugi is a beloved member of the WSA community, and we were thrilled to honor her in 2017 with our Lifetime Achievement Award. From her early papers describing the unique language strengths in WS to lessons she has provided about the links between gene and cognition, and most recently the knowledge that people with Williams syndrome have boosted levels of oxytocin, the so-called “trust hormone”,  Dr. Bellugi has truly made a difference for everyone in the Williams syndrome community.
Dr. Ursula Bellugi is revered as a scientist and truly loved by WSA families. She has left a legacy that will long be remembered.  Enjoy your retirement “Dr. B.”  We will miss you greatly!
--Terry Monkaba, Executive Director, WSA

Ursula Bellugi Salk Institute WSA White Night Tribute from 501(c)inema on Vimeo.

Scientist Tribute to Ursula Bellugi from 501(c)inema on Vimeo.

--Videos created for the WSA by Jon Kent, 501(c)inema

WSA Camps 2018

Camp Blue Skies once again partnered with us to welcome 40 adult campers with WS to Georgia in March.  Throughout the week, campers participated in a variety of activities from cooking to zip line, and everyone had a wonderful week in spite of cold, cloudy weather most days!  Blue Skies was followed in late July and August with the WSA’s two Whispering Trails sessions for campers ages 6 through 21.  Many of our campers and volunteers/counselors also joined us at the convention, so they had a very busy summer!

Long-time WSA camp director Robin Pegg, (pictured here with new director Alex Carrico (left) and retiring camp Nurse, Sue Spielmaker (center) passed the reigns to new camp director, Alexandria Carrico (Alex), this year. Alex first attended Whispering Trails in 2013 when she visited camp to conduct research for her master's thesis which involved holistic ethnography while studying at Florida State.  She is very interested in how music is used within a cultural perspective and how it can be used to promote advocacy. Alex became “hooked on camp” that summer and has been back each year since as a counselor and music instructor.  Alex (pictured in red dress) said that "I would say every night, 'this night is my favorite' and I would cry." She was struck by how the energy was not necessarily about how talented everyone is (though many are) but how flat-out powerful the audience appreciation and exuberance is, and how the campers root for one another.  

As a voice instructor, vocal director and band director, Alex is dedicated to breaking down barriers with music—bridging gaps and countering stereotypes of those with different abilities. One of the goals the camp staff has been working on (with Robin's guidance) for several years is structuring the camp programs so our campers have more input in aspects such as music choice and choreography. Alex plans to continue that process.  She explains that having agency of choice and being able to express their abilities while being in an environment of acceptance where they are embraced as individuals, is key and is making a difference. The teens work on song-writing, improv, adaptive strategies, dance combos, percussion, singing and camp favorite—open mike night, and they have a blast. Alex is excited to be the new camp director, and proved she was up to the challenge with great camp sessions this year. We hope that she, along with new assistant director (and long-time camp instructor), Donovan Thakur, will be with us for many years to come! 

We can’t thank Robin enough for her camp leadership over the past 5 years and congratulate Alex and the team for a great transition and program in 2018! Also saying farewell to camp this year is long time nurse, Sue Spielmaker. "Nurse Sue" has been taking wonderful care of our campers for 8 years and we will all miss her! 


Diploma or Certificate of Completion?  What’s the Difference? 

Robin Pegg, MEd, COTA/L, ATP/WSA Educational Consultant      

Planning for your child’s future can be complicated and intimidating.  When your child has Williams syndrome, it can be even more complicated and intimidating.  Planning for life after high school is enough, but what about high school itself?

We know that every child with WS is unique and will grow and develop at their own pace.  We also know that as awareness of WS has increased and as teachers are learning more and more about how to educate our children with WS, we are seeing more children with WS earn high school diplomas, even in states like New York and California where the graduation criteria are comprehensive and strict.

Consider this: You’ve made it through elementary school.  You’ve made it through those turbulent middle school years.  Now your child is in high school and the school is asking questions about whether your child is going to be on a “diploma track” or a “certificate track.”   Are you wondering what this even means?  Are you wondering why they are talking about this now?  Are you wondering why you weren’t talking about this a long time ago?  Those are great questions!

The conversation about diploma vs. certificate should happen much earlier than 9th grade.  This conversation should begin in elementary school. Why?  Two words: prior knowledge. Knowledge is a cumulative process.  What a student learns one year is the foundation knowledge for what will be learned the next year.  Therefore, the curriculum a student has been exposed to and what knowledge has been gained in the early grades has a direct impact on what knowledge the student is able to learn and understand in the later grades.  There is no right or wrong answer to the question about which track to follow but be sure that you have all the information you need before making this important decision, and most important of all, remember to plan ahead; because graduation starts in kindergarten.


Regional Social Events

Fall events  are popping up throughout the United States, with famiies visiting pumpkin patches, farms and petting zoos to celebrate the beginning of fall. Many thanks to our event hosts!

And even though it's only September, it's a good time to plan ahead if you're interested in hosting any regional holiday parties, which are good way for families to connect. Any WSA friend can host one.  The WSA will provide support for your event - creating a flyer and online event notices and notifying families. Simply complete our event form six to eight weeks prior to the date of the gathering.  The form can be found here. For ideas or other information on social events, visit  our information/ideas page. If your area doesn't have a holiday party, it's a good time to start the tradition! If you don't know if your region has one planned, it's a great idea to connect with your regional chair: they can be found here. Thank you for volunteering in your region!

New in the WSA Store

Whenever I Think About You... Help spread WS awareness at your next baby shower!  This beautiful bedtime story features children with Williams syndrome. It can be found in our online store here.