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October 2017

 

 

 

 

In this issue:

WSA and Team IMPACT

Education

Volunteer Spotlight

Research

WSA at the Symphony

Remembering a Special Friend

National Convention 2018


 Team IMPACT

The WSA is proud to partner with Team IMPACT (TI) to spread the word on how young individuals with Williams syndrome can participate in the inspiring program.

Team IMPACT is a two-year commitment and relationship between college sports teams and individuals with special needs that “connects children with serious and chronic illnesses to local college athletic teams, forming life-long bonds and life-changing outcomes.” 

Many of you may have seen the recent news story of 10-year-old Coleman Walsh and his exciting experience with Team IMPACT.  Coleman was drafted onto Babson College’s Men’s Hockey team. If you missed the news story and video you can view it here:  http://bit.ly/colemanbabson

Coleman’s mother Nanci Walsh, a regional chair for the WSA, is thrilled with the program and how it has worked for her son and family.  Nanci tells us that “working with Team IMPACT has exceeded our family's expectations and they have gone above and beyond to ensure this relationship will be a success.  When Draft Day was approaching, our relationship manager from TI went above and beyond to ensure Coleman would not be overwhelmed and would feel comfortable with the planned activities.  As Coleman’s relationship with the Babson College hockey team has evolved, his spirit is awakened and his confidence is growing.  These young men are teaching him how to be an active part of a team, to work hard in order to achieve goals, and most of all to have fun while doing what you love.  Coleman enjoys emailing and texting and eagerly anticipates their responses!  It has been our pleasure to see Coleman so happy to join this community of players and feel that he has a team to call his own—something he has wanted for so long.  To know that he has 20+ guys rooting for him when it comes to school, hospital appointments or when he is having a tough day motivates Coleman to get through whatever struggles or anxieties he is feeling.” 

Team IMPACT was launched in 2011 by co-founders Jay Calnan and Dan Kraft.  The organization seeks to improve the quality of life for children by matching them with local college athletic teams.   Calnan and Kraft enlisted support from a group of former classmates and business associates to foster key outcomes for children with serious and chronic illness by harnessing the power of a team to impact the children, their families, and college athletic teams. The children are drafted onto collegiate sports teams and become an official member of the team from “draft day” through to “graduation” from the program. The child gains camaraderie and support and the student athletes are taught lessons about courage, resiliency and life perspective that are not often learned in a classroom. Through structured case management, the organization establishes and cultivates these relationships to ensure a successful experience for the families and teams involved.

TI serves children 5-16 years old, whose social relationships and/or emotional well-being have been adversely impacted by their medical circumstances (having a chronic or acute illness or physical disability).  It is meant for families who are looking for ways to re-engage as a unit, are willing to make a commitment to their participating child, and are committed to building a relationship with an extended support network. They are paired with collegiate athletes from across the country (and their college sports teams) who express interest in participating in the program, and are willing to make a two-year commitment to a child, building a relationship with them and their family as a teammate.

The program has enrolled college teams across the country who are hoping to meet and inspire new friends. To date, TI has worked with two families who have children with WS: one active (Coleman), and one alumni.  WSA member and Team IMPACT alum, Michaela Spinney (front row, center) was placed with the Southern New Hampshire University Cheer team in 2013.  It was such a good experience, it led to a paid position at SNH. Eighteen-year-old Michaela is now a full assistant coach, attending all practices, planning routines and assisting on the mats—and she is very excited to get the opportunity to travel with coach McCarty and the team to Florida this winter for the national championship cheer competition. Michaela’s experience through Team IMPACT has resulted in lasting friendships, mentoring and meaningful employment. Two other children with WS are currently waiting to be placed with a team.

If you think Team IMPACT is a good fit for your child with Williams syndrome and your family, go to http://www.goteamimpact.org/ to learn more and apply.  Our kids, like most, get excited about sports and would love to belong to a team.  TI provides that and so much more!


 

Education

Introducing the Educational Support Program 

The WSA is pleased to provide our families and the individuals who support our children with access to our Educational Support Program (ESP).  The mission of the ESP is to help parents discover and learn the resources and practices necessary to become effective advocates for their children.
 
The ESP currently consists of two components (more will be added in the future):
Training
Coaching
 
The training component consists of a number of online training modules which parents can access via the WSA’s Google Classroom. Current training modules include:
Differentiation
Accommodations and Modifications
Goal writing
Curriculum Access
Creating a Vision for Your Child
Least Restrictive Environment
 
Each Module includes:
Introduction
Main Presentation
Videos
Resources
 
In order to access the modules, you will need:
Access to the internet
A Google email account (email accounts ending in gmail.com)
Many school-based email accounts are also google based. If you need a gmail account, they are very easy to set up. Please CLICK HERE.
 
The Coaching component is designed to provide parents who have completed the training modules and still need assistance a connection with an experienced individual who can provide advice and support.  These supports are intended to support the family as they navigate the process for themselves.
 
For more information and to review the modules go to: williams-syndrome.org/educational-support-program
 

 

Transition Goals for Your Next IEP

Are you tackling transition goals at your next IEP? Think employment! Vocational Rehabilitation and their Pre-Employment Transition Services (Pre-ETS) has a lot to offer for students who are eligible. Invite vocational rehabilitation services to an IEP meeting, find out what they have to offer and/or schedule a time with the vocational rehabilitation office near you. Application for vocational rehabilitation services should be easy. The Work Innovation and Opportunities Act WIOA is opening doors and streamlining the process! Visit their site here.


Augmentative and Alternative Communication

Does your child struggle to communicate?  Are they a "late talker"?  Have you ever heard the term "non-verbal" or "minimally verbal"?  Your child may benefit from Augmentative/Alternative Communication or AAC.  

From ASHA (American Speech & Hearing Association):

Augmentative and alternative communication (AAC) includes all forms of communication (other than oral speech) that is used to express thoughts, needs, wants, and ideas. We all use AAC when we make facial expressions or gestures, use symbols or pictures, or write.

People with severe speech or language problems rely on AAC to supplement existing speech or replace speech that is not functional. Special augmentative aids, such as picture and symbol communication boards and electronic devices, are available to help people express themselves. This may increase social interaction, school performance, and feelings of self-worth.

AAC users should not stop using speech if they are able to do so. The AAC aids and devices are used to enhance their communication.

Here are a couple of fabulous resources that describe AAC and its implementation.

https://www.asha.org/public/speech/disorders/AAC/

http://www.speakforyourself.org/uncategorized/aac-mythbusters-child-enough/

https://www.speechandlanguagekids.com/use-aac-child/

#TalkingAAC Conference is November 1-3, 2017 (co-founded by our own Robin Pegg): www.talkingaac.org



Volunteer Spotlight

Chris and Brad Lawson’s daughter Allyson is 25 years old.  Shortly after she was diagnosed with Williams syndrome, the Lawsons became members of our association, and when Allyson was just four years old, they hosted their first golf tournament to support the WSA.  Twenty-one years later, they are still getting together with family and friends each summer to play a little golf, have a lot of fun, and raise funds for the Williams Syndrome Association.  The event, called the “Scramble for Success,” has been very successful – in fact, the Lawsons and their friends have contributed more than $100,000 to the WSA.

Over the years, the people they work with, family and the local community have embraced the Lawsons and their cause.   Chris says the key to their successful event is word of mouth, and a golf event that is low-key, fun and less competitive than many other tournaments. It is also very reasonably priced, with great prizes. The golfers and family members look forward to it every year in August and many covet their special roles in the event. “The Hot Dog Guy,” which Allyson’s grandfather played for years, has now been passed on to a brother-in-law; and Allyson serves as the official greeter for the event. During the day, there are prizes for Eagle shots and there is always a 50/50 raffle which most often is donated right back to the cause.  The support of the community is evident in the golf courses as well. When their original location in New York closed unexpectedly, nearby Jackson Valley Golf Club in Pennsylvania came to their rescue on very short notice and the event was saved. The Lawsons live in a rural area of New York where there aren’t many other WS families, so they quietly and successfully began their own tradition of fundraising and awareness.
 
The Lawson family is a model for service to others: Brad is the operations manager for an assisted living facility for those with Dementia and Alzheimer’s and Chris is the facility’s receptionist.  Allyson’s sister also works in community service.  Allyson is involved in many volunteer activities through her day-hab program Aspire, including helping to serve meals on wheels to seniors and working for the Salvation Army. The Lawsons last attended a convention in 1998 when Allyson was little.  They will be in Baltimore next summer and if you happen to meet them, please say thank you.  We are thrilled to have the support of Brad, Chris and the entire Lawson family as well as all of their friends and relatives.  We are truly grateful for all they have done to support the programs of the WSA. 

Research

Earlier this year, the White Night for Research gala in NYC raised more than $500,000 for research. We are thrilled to announce that the generous contributions we received are alrady making a difference.  WSA is now supporting several major research initiatives: The Anesthesia and Sedation Management Study in Children with Williams syndrome is underway at Columbia University Medical Center (CUMC), four separate initiatives (including a major cardiovascular study) combined into one comprehensive at Boston Children’s Hospital (BCH). Additonally, WSA is currently funding studies on cognition at the University of Louisville and a behavior managemet protocol at the University of Wisconsin in Milwaukee.
Jocelyn Krebs, WSA board member and Professor of Biological Sciences and Medical Education at the University of Alaska, Anchorage, recently conducted an informative webinar which provided excellent detail on the important initiatives at BCH and Columbia. To learn more: http://bit.ly/research_webinar
 
 

 WS Families Meet the Detroit Symphony Orchestra 

The Williams Syndrome Association was invited to a special rehearsal with the Detroit Symphony Orchestra on September 27. As part of their community outreach efforts, the DSO is inviting schools and organizations to be guests at the famed Orchestra Hall, where individuals with special needs experience the sweeping music and beauty of the building—it’s a special partnership, and the WSA was thrilled to be chosen. A mix of families with young and older children heard a selection of music from classical to pop, including a medley from The Sound of Music and the soaring score from the movie E.T., which seemed to be everyone’s favorite! 
 
Trevor Lloyd, 25, was chosen as the “guest conductor” and he had the privilege of leading the DSO through a patriotic medley, which he handled with aplomb and confidence. Trevor and 21-year-old Jared Glenn were interviewed by a reporter from WDET, the local public radio station. Trevor and Jared, who have attended WS programs including conventions, the WSA Music Camp and the ACM Lifting Lives Music Camp at the Grand Ole Opry, were perfect ambassadors for spreading awareness about WS, and their enthusiasm for the opportunity and their love for music was infectious.
 
 

 We Will Always Remember...


The WSA lost a dear friend and wonderful volunteer earlier this month. Angela Cook McCarragher of Sharpsburg, GA, mother to Chase (21, with WS) and Devin (18) and wife to Pat, was a huge support to families of children with Williams syndrome in the Atlanta area and beyond. Angela volunteered for the WSA for many years.  Whether she was hosting gatherings for local families, volunteering at the national convention, providing support and information to newly diagnosed families or comforting the family of a child who was ill, she found a way to make things better. A memorial scholarship will be established in Angela’s name to preserve her memory. We will all miss her tremendously, and our thoughts and prayers are with her family. 


National Convention 2018

  

 

PLEASE JOIN US IN BALTIMORE!

WSA National Convention – July 11-14, 2018
Marriott – Waterfront Hotel, Baltimore, MD
 
The national convention is just 8 months away. Throughout the 60+ educational sessions you will have the opportunity to join leading experts and members of the scientific community as they share medical, educational and therapeutic developments that can change the trajectory of your child’s life.  Highlights of the 2018 convention include:
 
• Keynote presentation by Mike Porath, CEO of TheMighty.com, a digital health community that helps millions facing disability, disease and mental illness.  Mike got his start in journalism at ABC News, where he was the network’s first overseas digital reporter and was awarded the Society of Professional Journalist’s top honor for his reporting in Kosovo. In addition to many other network news positions, Mike is also on the board of directors and fundraising chair of The Dup15q Alliance, a non-profit organization that supports people with Dup15q syndrome like his daughter.
 
• An encore of the extremely helpful IEP “Drop-in Center.”  Parents can register for a 45-minute private consultation with a professional advocate to discuss your child’s IEP.
 
• Facilitated discussions with legislative representatives of key initiatives for our community as well as Medicaid, SSI, ABLE and WIOA
 
Therapeutic evaluations for infants and toddlers.
 
• “Round table” discussions and scheduled networking opportunities.
 
• Specialized children’s programs and sibling sessions.
 
• Private Block Party in Little Italy.
 
$60,000+ in scholarships to help families attend.
 
Inner Harbor attractions just outside our door.
 
• Minutes away from Washington DC
 

WE ARE LOOKING FORWARD TO SEEING YOU IN JULY!

For more information on the 2018 national convention, visit our convention page


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