Friends of the WSA Spotlights

The WSA couldn't continue to provide the support it does without the help of those who support us. Our wonderful group of volunteers is diverse, from youth who sell lemonade and cookies on our behalf, to grandparents who rock babies in the childcare room at every convention; from the dedicated medical, research and education professionals who provide their expertise at a moment’s notice to the Board of Trustees and the extraordinary Regional Chairs and their committee members who bring families together in their communities and provide local resources and support. The WSA is blessed with volunteers who coordinate our awareness and social events, fundraise, translate information, offer specialized skills, and answer questions for our broad membership…the list is long and ever-growing. We are blessed to have the support of hundreds of volunteers each year.

Without your support, we would not be able to provide the programs and resources that help us all tremendously throughout the lives of our sons and daughters, brothers and sisters, relatives and friends with Williams syndrome.

Thank you for all that you do for us. We appreciate your support, value your friendship, and look forward to working with you every day.

Though it's impossible to list everyone, we'd like to spotlight a few of you.

Lawrenceville School: Helping More Than Just the WSA!

July 2019

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.

Sarah Giddings and Jennifer Chaplin

September 2019

Sarah Giddings and Jennifer Chaplin, long-time friends and WSA volunteers, are serving on the 2020 convention committee and excited to welcome WSA families and friends to the Phoenix area next year!

Sarah is mom to Matthew (17) with Williams syndrome, is married to Mike, and has bonus daughter Taegon (18), bonus son Devyn (16), son Connor six. In addition to previously serving as a regional chair volunteer for our Canyon region (where Phoenix is), she is now serving her third year on our board of trustees.

The first convention Sarah attended was Richmond 2006 as a parent, which changed everything for her. She no longer felt alone, as she was able to meet other families and individuals with Williams syndrome. Spending time with adults with WS offered her a glimpse into the potential for her son. Sessions and support from professionals were important because Matthew wasn't speaking yet and still had major feeding issues. She also remembers getting a hug from former WSA staff member Anne Tipton at the registration desk when she was a bit overwhelmed.

Jennifer, who is a close friend of Sarah’s and has been volunteering for the past four conventions (since 2012 in Boston), really enjoys it and we love having her! She works as an event program manager, and her skills are most welcome. Spending time with Matthew and others with Williams syndrome inspires her and reminds her of the amazing abilities we all have. She can usually be found working at the WSA store on site, because “I know being in that spot is perfect for being able to reach out to all convention attendees for whatever reason they need- - a shirt, some info, a smile, a laugh....whatever I can do.” Jen agrees with the assessment many have that Disney World has nothing on a WSA convention and that it is indeed a very happy place where “happy tears” flow and that “taking a week out of my world to be surrounded by the happiest people I’ve ever known is an honor for me every time I get to do it.”

Sarah and Jen and the WSA know there are many benefits about summer in Phoenix, such as very reasonable hotel prices, LOTS of air conditioned activities... and seeing a part of the country many people have never experienced! Sarah can’t wait for first-time families to attend—“I’m so excited for families to have this experience...from the education, to the support of others, and the giant feeling of family reunion that happens! And for those kids and adults with Williams who haven't experienced convention, I'm most excited for them!”

The convention committee is looking forward to offering a convention full of all the things everyone expects from our biennial gathering: education sessions and access to experts, social gatherings and networking—plus some new, timely topics and activities. Save the dates for WSA Convention 2020: July 8-11, and stay tuned for more information here. Hope to see you next July!

Michelle and Richard Oliver

July 2019

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

Alice Paterson

February 2019

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.

Stephanie Ackley

November 2018

“Our Northwest group is very close and has a special bond. I love it!”

That is thanks in part to WSA volunteer Stephanie Ackley, who has been hosting the #Walk4Williams in that region along with other events for the past few years. She was born and raised in Portland Oregon, and she and husband Justin, her high school sweetheart, live there with daughter Maddie (16, WS) and ten-year-old twins Morgan and Caitlin.

Stephanie wasn’t always an active volunteer, however. She describes her early years of raising a child with special needs and then twins on top of it as “just surviving,” but “as they got older and we were figuring out our new normal, I was able to take on more.”

Stephanie admired how volunteers were able to organize the WSA walks and holiday parties and after they didn’t happen for a couple of years, she decided it was her turn and that she could handle it, though she says that was out of her comfort zone. The number of families in the Northwest region was fairly small until a few years ago when it seemed a handful of kiddos were born with WS. The timing seemed right and Stephanie decided that it was important to keep these events going twice a year. She explains that Facebook (which unfortunately wasn’t available when Maddie was younger), has really helped increase family connections as well.

When not planning WSA events, Stephanie divides her time between two jobs – working part-time as a supervisor at the Moda Center, home of the Portland Trailblazers, Winterhawks and large concerts, and at Urban Excursions PDX, picking up elderly citizens with dementia and Alzheimer’s to take them on outings in the Portland/Beaverton area. In her free time, she loves hanging out with her daughters, whom she calls her best friends.

Stephanie is looking forward to the holiday party for the region, which is her favorite because “everyone dresses up and is so excited to see Santa.” She enjoys the feeling that “at these events parents can just sit back and ‘breathe.’ We all understand each other. We don't have to be as guarded as we might be in the real world.” Families in the Portland area are lucky to have a volunteer like Stephanie—and we hope everyone enjoys the party. Thank you, Stephanie!

Julie Oglesbee

September 2018

“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 Infant and Toddler 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

September 2018

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, as the Onsite Registration Chair, 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.”

Erin Rupolo

February 2018

Erin Rupolo is the regional chairperson for the Mid-Atlantic region. As regional chair, Erin is available to families and understands the resources in her region. Need a document? Erin has it and will share it. She is a special education para-educator for Montgomery County Public Schools and a passionate advocate for inclusion, both in school and the community at large. She lives in Potomac with husband Brian and children Barrett, who is 10, and Sophie (WS), who is nine. With the 2018 national convention in Maryland in 2018, Erin is a great asset to the planning committee.

Erin isn’t only the regional chair, she began volunteering for the WSA as a co-coordinator for the Maryland Walk for Williams years ago. While attending a WSA Gala in DC when Sophie was a baby, the walk coordinator's mother and Erin’s Mom were seated at the same table. After some conversation between them, Erin found herself being recruited for the task, and helped coordinate the walk in its second year. The walk has since gone from a high school philanthropy project that raised $5,000 the first year, to one of our largest walks, raising 50,000+ in 2017. Erin’s 8th Walk for Williams in Maryland was her last as a chairperson. After many years of successfully building the walk, she has passed the baton to new coordinators Julie Crosby and Lauren Decker. Erin will continue to serve as a mentor and will fundraise via the strong and vibrant Team Sophie, named for her daughter.

Erin reports that member involvement is key to building great events--excitement and competition with building teams, and ensuring that an event is more than just a fundraiser (though that is important!) but also a gathering with entertainment for all and a focus on helping other families truly make a difference. The Maryland Walk has at least 35 individuals with WS in attendance—and the walk is all about each of them along with their family and friends.

It is our privilege to honor Erin for all her efforts and thank her for her hard work, and her infectious energy, as well as her openness and willingness to share knowledge and advice. We look forward to working with Erin for many years to come and are grateful for her continued dedication to the WSA as regional chair for the Mid-Atlantic region and as the team captain and head cheerleader for Team Sophie! Thanks for all you do, Erin!

Chris and Brad Lawson

October 2017

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.

Melissa Murphy and Jenny Knox

June 2017

Melissa Murphy and Jenny Knox receive "Special Impact Volunteer" award

Jenny Knox and Melissa Murphy The Williams Syndrome Association is all about connections - we work hard to connect families to each other, and to the professionals who can help. The ability to connect with each other for the emotional support we need throughout our journey with a child who has Williams syndrome is tremendously helpful. However, those aren't the only connections we need. It's also important for us to have the opportunity to connect with all types of professionals - medical, therapeutic, educational, research (for most of us there are too many to count) to help us find the answers about Williams syndrome that we are all searching for.

None of us can personally make all the connections we need on our own - we need help. That's one of the reasons the WSA was established - to help us make the connections we will need throughout our child's lifetime. Just like you, the WSA office cannot make all the connections you need on our own. And that is why we treasure our volunteers. Without them we wouldn't be able to hold the social events, fundraisers, conferences or national convention -without them our list of excellent professional resources would not continue to grow and improve as it does. Many of our volunteers have a "niche" - a special social event they hold annually, a fundraiser they like to organize, or they are someone who loves research and surfing the net, so they keep a look out for great resources and pass along that information to us. Thank you ALL for everything you do for the WSA and our member families!

In this new segment of the eNewsletter we will spotlight our amazing volunteers - special individuals who just keep finding more time for us, and more ways that they can assist.

Melissa Murphy and Jenny Knox are two volunteers who have made a huge impact on the WSA and local families in the Philadelphia area. They are volunteers who always find a way to do more -helping local families get together; creating one of the WSA's premier walks; helping on major fundraising event committees; opening doors to development opportunities for the WSA, regularly posting terrific resources for families, sharing personal and professional expertise on the WSA Board of Trustees and Board committees.

The list goes on...but it's not even the length of the list that is so remarkable, it's that Jenny and Melissa are making time to do all of these things for the WSA in the midst of very busy lives, as career women and young Moms. Jenny and Melissa, are incredible volunteers for the WSA, and it gives us great pleasure to recognize them as the WSA's first recipients of our "Special Impact Volunteer" award and to thank them both for, as the special award states, "Leading with Their Heart" for the Williams Syndrome Association.