We’ve had a few of our long-time members ask us for updates on the status of the complete session schedule, as well as what the activities for adults with WS will look like, as this year’s launch schedule is different from some of the previous years. I wanted to provide an update, and share a little bit of background as well.
Our goal, which we’ve shared several times in newsletters, in meetings, and in conversations, is to make this convention feel as similar as possible to others, acknowledging that this is a learning year for us. Our commitment to providing quality programming for the parents/caregivers and the individuals with WS has never wavered. This year’s convention planning has been exceptionally challenging for several reasons:
- Venue and Timing: The hotel & convention space was booked nearly 10 years ago, and the event had to be rescheduled due to COVID-19, which has created many logistical issues.
- Coordination Efforts: A list of tentative sessions was published on the website before registration opened. We’ve had challenges finalizing the exact time slots for a number of reasons. We are coordinating with over 50 doctors, researchers, educators, and other professionals, many of whom have had to make scheduling changes for a variety of reasons, causing a domino effect in our programming.
- Inflation: Skyrocketing inflation has significantly increased expenses, but we are trying hard not to pass these costs onto families, and this takes time & effort. In fact, registration is only $25 more than last convention, and the hotel rooms are $30+ less per night than last convention. We also have more free entertainment options. There also seems to be a lack of clarity around the true cost of this event. I can assure you that though the cost of registration and programming feels high, those registration fees only cover about 1/3 of the cost of the convention. It is why fundraising must continue and why we’ve been trying out methods of raising funds that involve getting outside of our immediate circles and involving new donors. The convention is a HUGE expense for the organization – those funds have to come from somewhere, and these costs do not include any staff time. It is important to note the convention has run a deficit for years, and it continues to be a priority for us to be fiscally responsible in planning.
- New and Smaller Team: Our team is new to this event, and currently smaller than in previous years. Despite decades of event planning experience, none of us have fully planned this convention before. Everyone is working beyond full capacity, and I can tell you our entire team is 100% dedicated to delivering a quality & impactful experience, despite numerous challenges. I am the only staff member who has assisted in planning this very complex convention, but only with a portion of the planning. I am also filling the majority of the ED role until Mary returns just before convention while managing my own responsibilities and leading the new staff through this complex planning process. In addition to all of that, we are trying to create policies and procedures to document all convention activities to ensure in years to come, the ship sails smoothly no matter who is at the helm. This includes convention planning, awareness month activities, walks & connection events, summer camp prep, and responding to thousands of calls and emails, all while dealing with some fairly major personal challenges.
- Attendance & Programming: Attendance is much higher than was expected for this year’s convention, which is a good problem to have but makes the puzzle of fitting in programming even more challenging. Some of the larger venues we planned on using are now unexpectedly closed for renovations this summer (Symphony Hall & Herberger Theatre). Additionally, the heat is expected to be more intense this summer than it has been, so we’ve had to adjust programming to ensure our adults with WS are safe while still enjoying themselves. This has all taken extra time. The last thing we wanted to do was release the detailed program, then have to take it back and change it. The good news is most of the same volunteer program leaders have returned again this year, so the programs will be in good hands in Phoenix! Here’s what I can share about programming:
- Infants & Toddlers: This group will receive the same type of onsite programming as they have in past years. Multiple rooms on the 3rd floor of the Hyatt will be converted to a daycare type look and feel, and activities will be provided throughout the day. Parents will pick up their kids for lunch, and snacks will be provided.
- School-Age: “Camp” will be provided by the Arizona Science Center, with lunch and snacks included! All-day fun for kids 6-12 will happen in the Convention Center, directly across from the Hyatt.
- Teens and Adults: This year, we will have tons of fun – just not out in the sun! Two days will be primarily onsite (with the possibility of a very close trip offsite for lunch) for fun, learning, connecting, and tons of activities! The other two days will be offsite, with a day at the amazing and interactive Musical Instrument Museum and a day at the Arizona Science Center! Watch for an announcement next week with all the details!
- Evening Activities: At previous conventions, we’ve received a large amount of feedback that offsite activities every night that cost extra are overwhelming and cost prohibitive. We've tried to create an evening schedule based on feedback, weather, and cost for families. We’re offering:
- Opening Festival
- Free Exhibitor Night
- Free Baseball Game
- Free Glow Bingo
- Free Karaoke
- Closing Dance “Mane Event”
Given all of these circumstances, we ask for your understanding and patience.
We recognize the importance of transparency and communication. We have provided multiple updates through various channels and will continue to do so. We also know it’s easy to overlook information on the website or in our newsletter, as everyone has so much information coming at them each day.
Finally, I also want to note that we are working on publishing the 2023 impact report in the next few months, which will hopefully provide additional information and transparency about the inner workings of the WSA. For some insight, we responded to over 2,000 inquiries/requests for referrals, support, & services last month alone, and the demand for our support is growing. In 2023 our membership grew significantly, with over 1,400 new members compared to 500 the year before. Our small staff of seven serves approximately 6,000 WS families throughout the year, creating a demanding work environment.
I hope this information helps clarify the current situation. I assure you that we are doing everything possible to deliver a quality experience and provide information as soon as it’s available. We aim to release sessions and child/adult programming schedules sometime next week at the latest, and the app within the next week or two. Until then, we appreciate your patience and understanding during this process. One of the things I love about working for the WSA, and as a parent of an individual with WS, is knowing we aren’t alone in this journey. Thank you for your ongoing support, and we look forward to seeing you in Phoenix.
Sincerely,
