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February 2019

 

 

 

 

February 2019 Issue

Five Year Strategic Plan

WSA Website

Research

Member Spotlight

Miracle Flights

Awareness Month

WSA Camps

 

Strategic Plan Sets the Stage for Next Five Years   

The WSA board of trustees, executive director and representatives from staff, regional chairs and general membership gathered in November to update the WSA’s mission, vision and core values and create a five-year plan in our key program areas of community support, resources and research, as well as organizational structure.  The WSA is growing and the world is changing.  Regular strategic planning based on your responses to specialized surveys as well as networking at conventions, camps and local events helps to ensure our ability to stay current and focused on the needs of our membership.  Throughout the past 35 years, we have grown considerably, and we take pride in our ability to stay flexible to the changing landscape and continue to find new ways to support individuals with Williams syndrome and their families as well as form partnerships with professionals, agencies and similar organizations to ensure brighter futures for our daughters and sons.  
 
As we begin 2019 and the next phase in our growth, our priorities are on finding ways to promote and facilitate meaningful inclusion in all environments and provide support to all families throughout the lifespan.  In addition, we will continue our efforts to fund high impact research and ensure the growth of research expertise in Williams syndrome.  Finally, we recognize that we cannot succeed in any of these areas without increasing our capacity and building our infrastructure.  Click to review our new Mission, Vision and Core Values, as well as our five-year goals.
 
First Steps
 
We have just taken the first step to increasing our capacity with the hiring of a Director of Development for the WSA, and we are pleased to introduce you to Kalyn Frame. 
 
Kalyn resides in New York City and has a deep background in development, working for organizations including the Multiple Sclerosis Society of NY, Leukemia and Lymphoma Society, and most recently, Susan G. Komen.  We are excited to welcome Kalyn to the WSA team! 
 
As a development professional with nearly fifteen years of nonprofit fundraising and development experience, and a degree in fundraising management, I am looking forward to implementing and managing a strategic fundraising program, focused on individual and major gifts for the WSA. 
 
I value building and nurturing relationships, and I enjoy engaging donors beyond a transaction of making a gift. Deliberate and thoughtful fundraising enhances the donor experience, and develops meaningful relationships, which will elevate the WSA's efforts to achieve the mission. 
 

I am delighted to join an organization with such committed and passionate volunteers and leaders. I look forward to learning more about you and your families, and working together to make sure that the community we serve has the support and resources they need to live healthy and meaningful lives. 


Priority one as we work to improve technology and our infrastructure is an update of the website.  Are you a tech guru, or perhaps a web designer?  The last time you accessed the site did you find yourself muttering about ways it could be improved in design, navigation or content?  If so, we would love to hear from you.  Our site update workgroup is considering all ideas, big and small.  Send your thoughts to info@williams-syndrome.org and be sure to put “Website” in the subject line.  Thanks!


Have you ever heard of an ICD code?  ICD-10 codes are used for everything from processing health insurance claims to tracking disease epidemics and compiling worldwide mortality statistics. Your child’s physician may have asked you for it, to help with billing.  There has never been a specific code for Williams syndrome… doctors have been using generalized codes for “chromosome deletion” or “congenital abnormality” etc. That seemed fine until we learned that it was a huge detriment to many research studies.  For instance, if researchers want to study all the individuals with WS who have undergone heart surgery they have to open up every medical record of a person who had heard surgery under each of several broad categories to see if the patient had WS. That is time consuming, and costly, and inhibiting researchers from undertaking these studies.  The good news is that last year we were able to request and successfully defend our position for a new ICD-10 Code for Williams syndrome, and in October 2018, the code was activated.  Please tell all your children’s doctors that ICD-10 Code - Q93.82 for Williams syndrome should now be used for all procedures.  The quicker we can help gain widespread use of the new code, the quicker we can have an impact on future research into Williams syndrome!
 

Alice Paterson has been sharing her creativity and talents with our community in a really kind and generous way. Alice is the mother of a 23 year old son with WS and is a retired teacher. She says she has a calling  to send some comfort to children with WS through her crocheted creations, especially if they are having surgery or facing other issues and need something to comfort them; she customizes them to honor a child’s interests/favorites. She counts on word of mouth to alert her of circumstances where one of her designs might be welcome, relying on other WSA moms to keep an eye out for social media posts; sometimes, people contact her, but it’s usually a referral. 
 
Alice has donated at least 100 items to children with Williams syndrome so far - from hats to blankets and stuffed toys. She also sells items to help with the costs to replenish the supplies she needs to continue the donations. Alice’s crocheted efforts are appreciated by those who receive them, and many have commented how much a blanket or stuffed animal meant during a rough time and that they have become treasured possessions. Alice and many others are making a difference for children with Williams syndrome and their families.
 

Miracle Flights: Help with Medical Travel

Miracle Flights was founded in 1985 as a nonprofit health and welfare flight organization that provides children and their families free flights to distant, specialized care and valuable second opinions. Their mission is to “provide free commercial flights to those in need of life-changing medical care not found in their local communities.” In the past, they primarily served children, but they have opened up their services; in fact, 25 percent of their flights today serve adults. Additional details on their services include:

Coverage: Miracle Flights can provide travel for treatment, surgery and clinical studies. In addition, they provide flights for travel to pick up service dogs, since they realize that these companions can be a vital addition to a health program.

Eligibility: Low-to middle income families. Call for a consultation to see if you’re likely to qualify before taking the time to fill out the form.   Who can travel? If the patient is a child, up to two caregivers may also travel on the flight. If the patient is an adult, he or she can be accompanied by one caregiver.  

Miracle Flights appreciates two-four weeks lead time, but they understand that emergencies happen and they make exceptions/accommodations.  They recommend contacting them  to request exceptions.

The great news is that the organization does not limit how often their services can be used per year and families can apply for long or shorter trips. Miracle Flights knows that a five hour drive can be taxing, so they encourage both cross country and in-state trip bookings. They are also able to work with any airline so they can get the patient to the the airport that works best for them.

 If you’re not sure if your situation or finances would qualify for a flight, give them a call and ask--they are a very friendly and engaging organization! “Zack’s” parents provided the following personal recommendation:

The specialized cardiac team at Boston Children’s hospital provides Zack with the ongoing and complex heart treatment he needs.  He was last flown by Miracle Flights to be evaluated by a genetic specialist at Massachusetts General Children’s Hospital at the beginning of October.  We are lucky for Zach to see a geneticist who specializes in Williams Syndrome.  The generosity of Miracle Flights allows Zack to be treated by doctors who understand and can treat the many issues associated with Williams Syndrome, and we are so appreciative!

Miracle flights is an amazing support for our family. We appreciate the organization and everything it does to help children and families.  The service that Miracle Flights provides eases the financial burden and reduces the stress of multiple medical trips.  Despite his health challenges, Zachary is growing and learning every day.  Thank you for supporting our family.

To find out more or contact the organization: flightspecialist@miracleflights.org or visit their web site: Miracle Flights


 

Williams Syndrome Awareness Month

The WSA calendar is beginning to fill with walks and other awareness activities.  You can join the excitement and schedule an event for May or later this year (any time is a good time for awareness) to celebrate awareness!

#Walk4Williams events are not only wonderful for increased awareness, the are also crucial fundraisers that make programs, research and events possible for families affected by Williams syndrome. WSA is entering its tenth year of awareness activities and each year is getting better! Thank you so much for all you do to make this happen! If you would like to attend, host an event or start a fundraiser, Click to find out how. 


WSA Camps

This has been a challenging winter for many of our friends around the country, so...let's think summer! And what's more "summer" than camp? Registration is now open for our camps at Camp Nissokone in Oscoda, MI, which are the highlight of the year for many elementary-aged children and teens, and we hope your child can join us this year! 

Whispering Trails Therapeutic Camp Experience for ages 6-12: July 21 - 25, 2019. Children attend with one adult caregiver.  Sessions are led by therapy professionals (MT, OT, PT, etc) and include singing, dancing, musical instruments, arts and crafts, and motor activities, plus swimming, boating,  outdoor games, campfires, karaoke and entertainment.  Parents enjoy optional educational sessions, networking opportunities, and some R&R while the kids are in sessions.

Whispering Trails Music and Enrichment Camp: Ages 13-20. Our music and enrichment camp includes music lessons, chorus, dance, band opportunities, arts and crafts, and regular camp activities (archery, swimming, boating, horse back riding, climbing wall, hiking etc).

Visit our camp page for more information, including links to partner camps. 


 

 
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