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July 2019

 

 

Awareness:  Simply Life-Changing!

A Culture of Philanthropy

Member Spotlight

WSA in the News

Helping More Than Just the WSA!

The WSA Blog 

Ask the Expert Series


Awareness: Simply Life-Changing!

The WSA is proud to be celebrating 35 years of support to individuals with Williams syndrome.  When a handful of families first applied for nonprofit status for the Williams Syndrome Association back in 1983, no one really knew how big the WSA might become, or the range of support that the organization could, and would, provide to families. They only knew they wanted to help in every way possible.  
 
Over the next 25 years, the WSA experienced slow and steady growth.  A professional advisory board was created, and we worked closely with experts in the field to ensure that we had the latest information about medical treatments and educational strategies to help those with Williams syndrome.  We forged alliances with prominent WS research teams and helped to foster better results and new studies through small grants and providing opportunities for researchers to further their studies at regional conferences and national conventions.  We created a music camp and other specialized programs for school age children, teens and young adults with Williams...and much more.  After 25 years we were still small, but we had built a sound infrastructure, established financial stability and become a model among parent organizations for rare conditions.  We were proud of the organization we had become.
 
And then we started our awareness initiative.  In 2009 we declared the week of May 9-16 as Williams Syndrome Awareness Week.  We thought it would be great to have a few walks and raise some money (our goal was $25,000) for programs and scholarships.  The initiative was successful beyond our wildest expectations – WSA volunteers around the country hosted 42 walks and raised nearly $150,000 for programs and scholarships!  Additionally, we received more media attention for Williams syndrome and the WSA in just one week than we had in the entire 25 years leading up to it.  The response was phenomenal and far more importantly, awareness week in 2009, and awareness month in the years that have, followed have altered the mindset and the momentum of the Association and set us on a new path of support for families.  In fact, awareness month has been simply life-changing!  
 
Awareness month events have raised nearly $5.5 million dollars and more than 15,000 people are now directly participating nationwide!  Our awareness fundraising success has enabled us to increase our annual scholarships for camps and post-secondary programs from $5,000 to $35,000, and travel assistance for the families of children who require special treatments and surgeries is now $25,000 annually.  Additionally, scholarships for national conventions, which are currently $75,000 per convention, were not available at all in 2009, and we have been able to increase funding for critical research studies from just $30,000 per year to more than $500,000 annually.  
 
Added to the direct impact of awareness events, stories on network television (20/20!) and in the Wall Street Journal, and this year in Atlantic Monthly as well as local news stories have expanded our awareness reach to hundreds of thousands more.  Williams syndrome is now included with more than just a passing mention in increasing numbers of both medical and educational textbooks.  Although Williams syndrome is not yet a household word, MANY more people are recognizing the term as one they have heard before.  
 
Our tenth year of awareness brought us, once again, to new heights of success.  Awareness month “unofficially” became awareness season with 42 walks spread over 8 weeks, (with 3 more still to come!)  We have already welcomed 15,000 participants nationwide and raised more than $750,000 for programs and support!  And that was almost entirely through private donations.  But the need is still great!  Ever-evolving specialized programming, scholarships, assistance and research funding needs continue to grow, as well as the need for new expertise and knowledge that only increased awareness can bring. 
 
Personally, and on behalf of the staff, trustees and nearly 7,000 families in our membership, I would like to extend a very special THANK YOU to our walk, and other volunteer awareness event coordinators and their committees, to every family who hosted an awareness event or special fundraiser, and to each WSA family who attended and encouraged the participation of their families and friends. Each of you has made a difference in the lives of those with Williams syndrome.  We cannot thank you enough for putting your trust in the WSA.   You have empowered us to continue to grow stronger and to help ensure the best and brightest future possible for everyone with Williams syndrome.
 
--Terry Monkaba, Executive Director, WSA
 

Building a Culture of Philanthropy for the WSA

What do you think of when you hear the words “development”? Do you consider it a partnership? When you make a gift to a nonprofit, do you feel as though you are an integral part of the culture?  
 
As members of the WSA, I know that we all want to improve the quality of life for those living with Williams syndrome. Volunteering, serving as an advocate, and making a donation are all meaningful ways to take action. 
 
Most donors believe that they are helping to enact change by making a donation to an organization—that our investment in the organization is an expression of meaningful engagement. As individuals, we cannot personally connect recently diagnosed babies to early interventions and therapies or partner with specialists to treat the cardiac conditions to which our community is susceptible. By ourselves, we cannot send kids to camp, or ensure that vulnerable young adults with WS will be safe in the community.  We cannot provide appropriate employment opportunities or ensure that stakeholders are introduced to educational and medical resources for families and professionals. But, with support of the programs of the WSA, you can. The Association provides avenues of impact, to give meaning and to empower our donors.
 
And that is what separates development from fundraising. Fundraising is a means to an end, while development is focused growth and mission advancement. Fundraising is transactional…development is about philanthropy, and philanthropy is fundamentally social; it’s about love — and nothing could be more transformational. 
 
You have already learned from this issue (this month’s blog) that the Awareness Initiative has been “Simply Life-Changing” for the WSA.  It has set us on a new path, a path that can lead to amazing new heights for our association–a path that is forged by implementing a culture of philanthropy. It is my pleasure to invite you to join us in embracing the true meaning of development and philanthropy–love of humankind. The outcome is not only about money. In fact, the outcome is primarily about impact. The culture we are fostering is a set of organizational values and practices that support and nurture development within the organization. It’s an important part of building cohesion and teamwork, and it’s vital that we all understand how we contribute to this culture. 
 
Clear and valuable communication outlining the WSA’s priorities and vision, are also important components of building our culture of philanthropy. We are partners in this endeavor; together we are making our community stronger and healthier. Finally, a culture of philanthropy dictates consistent and meaningful stewardship. 
As a donor, we want you to realize this significance–the impactful expression of our shared values–an understanding of what philanthropy accomplishes. It’s a powerful thought–how can a love of humankind change the status quo? And how can we ensure that you feel empowered, not just once, but on an ongoing basis? It is my privilege to help you, and ALL of our donors and members experience the joy of philanthropy. 
 
Supporting the WSA can take many forms. You may choose to participate in an awareness walk, create a Facebook birthday fundraiser, attend biennial conventions or donate to the annual fund.  You may choose to make an introduction to someone who can help elevate our cause, or perhaps, identify yourself to me as someone who would like to partner with us in a more lasting and personal way–with a legacy gift or significant partnership to expand WSA programs. 
 
I encourage each of you to view the WSA through a new lens—to take a proud approach to philanthropy. The work we do is critically important, and we are looking for partners to make sure that the needs of our community are met. Just as donors cannot make change alone, the Association cannot do its best work alone. The WSA is entirely funded by private donations. Every dollar raised truly makes a difference in our ability to offer life-changing resources, and fund life-saving research. 
 
A shared love of humankind, and specifically for those with Williams syndrome, is central in moving us closer to achieving our mission—to ensure that every individual with Williams syndrome will have the support they need to live productive and fulfilling lives. 
 
-- Kalyn Frame, Director of Development
 

Member Spotlight

Michelle and Richard Oliver, whose son Archie (age 6) has Williams syndrome, have planned and hosted the Santa Monica #Walk4Williams since 2016. The event, held at  Ocean View Park (yes, it as nice as it sounds!) is always very successful  in terms of both attendance and fundraising, as well as onsite activities, wonderful food and a great walk along the beach to raise awareness. 
 
 Additionally, Richard has created the “Art for Archie” campaign which raises funds for the WSA and provides beautiful works of art which are donated by Richard’s friends in the art community to lucky winners.  Richard has also personally created beautiful portraits of individuals with WS, including a portrait of Madison DeLeon (WS) in 2016 which was used to create a beautiful awareness card for the 2016 walk, and a wonderful pencil drawing of Jonathan Martinez to provide to his family when they attended the walk in 2017 following the tragic loss of their son.  
 
Each year, the Olivers have worked hard with local vendors to secure great donations of food and entertainment (from local firefighters, DJ and drum circle leaders to Star Wars characters who join the attendees for walk!)  We cannot thank the Olivers enough for their leadership!  
 
*After four dedicated years, the Olivers are stepping down from their role.  If you are local to the Santa Monica area and would like to help ensure that this great event continues, please contact Lori DeLeon.  Lori has been helping the Olivers each year, and would love to continue to hold the walk—all she needs is a solid committee to help! You can contact Lori at lorideleon35@gmail.com

WSA in the News

Recently, The Atlantic magazine published a story about the social aspects and science of Williams syndrome. Writer David Robsons primary focus was the science of genes, the evolution of behavior and social instincts and what people with Williams syndrome can teach others. 

Robson also interviewed WSA Executive Director, Terry Monkaba and WSA parents, Jocelyn Krebs and Cyndra Cole, as well as Maegan Miller, and Ben Monkaba, young adults with WS to provide additional personal insights for the story.
 
In case you didn't see the article when we first shared the story on social media, take some time to read it hereTo read and watch other news stories about Williams syndrome, click here

Lawrenceville School: Helping More Than Just the WSA!

Students at The Lawrenceville School in New Jersey, who host a color run to raise funds for the WSA in honor of Ella Larson (WS) every fall, embarked on a memorable service trip for spring break this year. Ella’s father Jason Larson (athletic director at The Lawrenceville School) and another colleague took 12 students to perform service work for Give Kids The World Village (GKTW), an 84-acre, nonprofit “storybook” resort in Central Florida where children with medical challenges and their families are treated to weeklong, free vacations; Ella enjoyed visiting the resort in 2015 via Make-A-Wish, and the Larson family was so touched that they wanted to give back in a meaningful way.
 
The students from Lawrenceville volunteered in the village at various stations including helping with food service, operating amusement park rides, supervising pool activities and helping at a salon to help support the families in attendance. And that’s not all - while in Florida, the students also volunteered at the local Ronald McDonald House, making dinners for families who stay at the house while their children are being provided care at the local children's hospital.  
 
While in Florida, the group was also able to enjoy Magic Kingdom, Epcot and Hollywood Studios  We are continuously inspired by the compassion and community service displayed by the students at Lawrenceville and encourage our members to investigate both GKTW and Ronald McDonald House
 

Become a Contributor to the WSA Blog

One of the ways the WSA connects with the Williams syndrome community is by offering blog content on our website. We or guest bloggers write stories that inform on topics such as programs, research, and education as well as fun topics such as how best to utilize Disney with a child who has Williams syndrome. We are always seeking meaningful contributions and would love to hear from you!  We know many of our member families and their children participate in great programs such as Best Buddies, Special Olympics, TeamIMPACT and more.  We would love to hear about your experiences. 

Have you had success in inclusive programs that are not specific to those with intellectual disabilities? Perhaps a theater or sports program in your area is doing a wonderful job to include all community members? Have you come across an incredible resource or individual in your community that could help everyone?
 
Please contact us if you would like to contribute information and share your expertise about one of the ideas above or another topic that you feel will be of benefit. We would be happy to review your blog for possible submission now or in the future.  Perhaps you aren't a writer but have ideas about possible blog content - feel free to let us know that as well! info@williams-syndrome.org 
 
Missed any past blogs? Click here to catch up!

Ask the Expert - WSA's New Webinar Series

Do you ever wish that you could spend just an hour or so in a question and answer session with one of our professional advisors?  Now you can!  As an organization, it is always our goal to reach as many families affected by Williams syndrome as possible and we're excited to offer a way for parents and caregivers to connect with experts conveniently online.

Once a month, an expert on a topic related to Williams syndrome will be conducting a webinar and Q/A session. Attendees have the opportunity to send in their questions prior to the webinar date to ensure they will be answered.  In addition to answering previously submitted questions, our experts will provide general topic information and take additional questions during the call.
 
To help accommodate work and family schedules, as well as time zones, the online sessions are held at 9 p.m. EST and will not exceed one hour. Each session is recorded and available online for those who can't participate in real time.
 
We are also offering an additional monthly Ask the Expert: IEP Edition. Every month, our education consultant Robin Pegg hosts a session specifically about IEPs. 
 
Please register and send in your questions - we look forward to hearing from you and making these sessions available for all.  For information and to register click on the link below.
 

 

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