What to expect from this year’s HDSA convention
A leader at the organization shares her insight
Social worker Jessica Marsolek is the associate director of community services for the Huntington’s Disease Society of America (HDSA). My wife, Jill, who is gene-positive for Huntington’s disease (HD), and I met Jessica several years ago at an HDSA-sponsored online support group and were impressed by her passion and care for those in the Huntington’s disease community.
Because HDSA’s annual convention will take place June 26-28 in Indianapolis, I thought Jessica’s insight might be helpful for those attending this year’s event. Excerpts from our email exchange follow, with light editing for style.
CB: What makes this year’s HDSA convention particularly exciting?
JM: First of all, it is the 40th annual HDSA convention. Second, the convention is like a big family reunion. I know I look forward to this event every year, and being able to reconnect with incredible friends I’ve made over the years is so wonderful. Also, it is centrally located in the Midwest, which we hope will be accessible.
Can you give us a sneak peek into some of the key sessions or speakers planned?
Jessica Marsolek is HDSA’s associate director of community services. (Courtesy of Jessica Marsolek)
We are excited to offer a variety of sessions that are geared to offer something for everyone. We know that over half of our attendees are first-time attendees, so we make sure that we have new-to-HD/new-to-HDSA welcome sessions and will be sharing suggestions to our first-timers. Also, at the beginning of the convention, there will be a session for first-time attendees.
New this year: We will be having a regional meet and greet, which will be hosted by regional development officers from each of our four regions. We realized that it is nice to be able to meet community members from our own state and region, then be able to spend the rest of [the] convention getting to know each other and building stronger relationships. We also want to ensure that our local social workers are known to attendees, so they can put a name to a face, for if and when support and resources are needed.
What are the main goals for this year’s convention?
Our main goal at the convention is to create a space where those impacted by HD can feel safe to be who they are, to be surrounded by a large community of people who “get it” and care about them. [Second], we hope that attendees make connections with others — both community members and professionals who make their life better. Third, we want attendees to have fun. HD is so hard. We schedule our days for learning and our evenings with a welcome reception, a National Youth Alliance talent show, and a gala to come together in community to laugh, dance, and break out of our shells to have fun.
How will the convention address the needs of patients, families, and caregivers?
When planning the annual convention, we utilize previous years’ feedback from attendees as well as input on topics of interest for our sessions offered. In addition to educational sessions, we also offer a variety of professionally led support meetings. There is a National Youth Alliance Day the day before [the] convention begins. We’ve also included activities for youth and young adults throughout [the] convention. These activities are led by the incredible MaryAnn Emerick, HDSA’s senior manager of youth and community services, along with the support of our five youth and young-adult social workers.
What networking opportunities can attendees expect?
If I see a convention name badge, I say hello and introduce myself. I’ve met some of the nicest people. Everyone is so friendly and kind. The convention schedule allows several opportunities to mingle and network, including the regional meet and greet, the welcome reception, the reception prior to the gala, as well as in common areas. Most of the meals are provided through the convention, so during meals, [you can meet new people] by sitting with new-to-you friends.
Note: Huntington’s Disease News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Huntington’s Disease News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Huntington’s disease.
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