The arrival of summer seems to bring with it more than just warm weather—it’s also the time of year when a slew of diabetes-related conferences and retreats start. I have already attended one this year and hope to make it to at least one more. If I wasn’t located on the east coast, I would definitely consider attending the very first ConnecT1D Retreat in Seattle, Washington.
If you’ve never heard of the ConnecT1D Retreat it’s because this is the very first year of its existence. It’s put on by ConnecT1D, a non-profit organization run by volunteers and which aims to provide programs and resources that connect individuals within the type 1 diabetes community.
The ConnecT1D website is a wealth of information, but I was curious about learning more about the origins and purpose of the brand new retreat taking place at the end of this month. I had the privilege of getting answers to my questions from Susan Horst, the project manager of the ConnecT1D Retreat. After hearing her story, I felt incredibly inspired, moved, and wishing more than ever that I could go to the retreat. Read on to learn all about the ConnecT1D Retreat.
Could you tell me about yourself? What is your connection to diabetes?
The short answer: I worked at JDRF for seven years, my dad was LADA and sister has Type 2 diabetes.
The real answer: I’ve lived in Washington State since 1987, have a degree in Business from Colorado State University and started my career in computer software sales here in the NW. My life changed for the better in 1993 when our son, Nicolas, was born. He was born with congenital heart defects that required open heart surgeries when he was 1 and 2 years old. He had a stroke during the second surgery. Every other summer he was in the hospital for one surgery or another. I spent those years caring for him and working at first full time and after his stroke I either worked part time or volunteered as much as I could. My husband, Jeff, had to bear the weight of financial responsibility for providing great insurance and a salary that would allow us to give Nicolas everything he needed to succeed in life.
I went back to work full-time in 2006 for JDRF Northwest Chapter in Seattle in development and loved it. I believe it was a fit for me, without any direct type 1 connections, because I could relate with the parents of children with type 1. Our job description as parents was similar. Keep our children alive. Sacrifice all that you need to. Make our children feel like kids, with all the same opportunities that their friends had. I had so much passion for JDRF’s cause. There was nothing medically I could do for my son. There would be no cure for the damage from the stroke. He was not a candidate for a heart transplant and doctors did not give him long to live. But JDRF gave me a chance to put my heart into something I needed so badly. Hope. Hope for the thousands of parents and kids in Washington living with Type 1 diabetes. In 2011, Nicolas was finally strong enough to have a heart transplant. It was a success, but of course our new transplant challenges were at times overwhelming. I went down to part time work at JDRF. When my son was a senior in high school I had to leave JDRF. I needed to be full time preparing my son for graduation and post-graduation. The stroke left him with cognitive impacts that made school and life a little more challenging. He now needed to be ‘launched’.
Nic, my husband, and I succeeded. Nic graduated from high school and attended his first semester at our local college. On December 4th, 2014, at 21 years of age our son died.
It’s been one year and five months now. After Nic’s death, I immediately turned back to the community where I’d always found hope. I started my own consulting firm specializing in new program management in the diabetes industry. I’ve had projects with well-known diabetes research firms, healthcare systems, pharmaceutical companies and amazing diabetes non-profit organizations like ConnecT1D that hired me to put on this groundbreaking retreat called ConnecT1D. Our family raised money for JDRF every year. Last year was the first year I did it without my son and husband and will again this year.
Over the years working on the JDRF Ride to Cure Diabetes program I began to meet amazing adults with type 1 diabetes. I probably now have more friends with T1D than friends that don’t have T1D. My passion for working in the diabetes world continues.
What is the ConnecT1D Retreat? Could you provide me with a brief history that describes how it first started?
Two years ago the American Diabetes Association dropped their expo in Seattle. The T1D community had always had a small area for displays and sometimes a room for T1D speakers at the expo.
The founders and board members of ConnecT1D® didn’t want to lose that gathering opportunity for people with type 1 diabetes. They contacted me and asked me to develop a new program to replace the expo. The mission of ConnecT1D is to connect people living with Type 1 Diabetes through programs, social networking, educational meetings and support activities at every stage of their lives. ConnecT1D has offered ConnecT1D Family camp in the fall for the last 5 years. Plus they have social events for teens, tweens, parents and adults with T1D. ConnecT1D Retreat is the opportunity they were looking for to support the adults and older teens with T1D. It is also an opportunity to bring even more adults and teens with type 1 diabetes into the supportive T1D community here in the NW.
As you probably have heard, there are far more adults with T1D outside the T1D community than in it. Some say as many as 70% of adults with T1D are not actively seeking new information on T1D management. This group tends to rarely see an endocrinologist or diabetes educator, gets their prescriptions from their primary care doctor, doesn’t know anyone else that has T1D, feels isolated by their diabetes and often struggles with their diabetes management. We need to reach out to this group and support the 30% that are in the community already. Too many adults and teens are forced to deal with the stigma, guilt, and fear (of being ‘found out’ to have T1D, which often brings judgments on them/their character and inappropriate questions and suggestions). The only way to change this is by bringing our communities together locally across the country.
What makes your retreat unique compared to other retreats and conferences for those living with diabetes?
This retreat is for people with Type 1 diabetes. As chronic diseases, there are more ways Type 1 and Type 2 diabetes are the similar than ways they are different. This retreat, however, is just for T1Ds. The goal of the retreat is connecting with others, making friends locally that you can depend on and hang out with.
When and where will the 2016 ConnecT1D Retreat take place? Saturday June 25 – Sunday June 26, 2016 in downtown Seattle and overnight at the Clearwater Casino Resort- just a ferry ride away!
What should retreat attendees bring with them?
All of their own diabetes supplies, including back-ups, comfortable clothes for both days, recreation clothing for Sunday hikes, paddling, swimming, etc., a small overnight bag,and any foods required for special diets. Gluten free food will be available for those who indicated this on registration.
What would you say to someone who is interested in attending the retreat but is reluctant about how it might benefit them?
Seeking advice from your doctor and/or endocrinologist or diabetes educator is always the top priority, but as good as their care is, they’ll never give you all the information you need to live a great life with T1D. Some things can only be shared by others who walk in your shoes. And the more people you interact with the better. You may meet people who work in your industry, or people that play the same sports that you do or like the same restaurants you do or are single/married/divorced. You have learned so much living your life with T1D. Others have too.
You are not alone.
How do you register for the ConnecT1D Retreat?
Go to ConnecT1DRetreat.org and click on ‘Get Tickets’. Be sure to head back to the information on the website once you have registered. Adults (21+) with T1D and their spouses/partners (T3) can choose to attend the full 2-day retreat, which includes lodging, meals for 2 days, walk on ferry pass and 2 days of keynote talks by Joe Solowiejczyk and Kerri Sparling—both well-known in the DOC! Plus amazing breakout session speakers like Dr. Jody Stanislaw from UT and plenty of down time to really connect, share, laugh and learn with other people with T1D. Sunday includes a men’s only, women’s only, couples and spouse/partner sessions. Adults and teens (15+) with T1D can choose to attend the Saturday 1-day event, which includes lunch, beverages, snacks, teen only breakout sessions and adult only sessions. Large group, medium group and small group sessions Parents of young adults (under age 26) and high school nurses have the Saturday afternoon evening ticket. Joe and Kerry will address this group and lead discussions Spouses/Partners of adults with T1D can choose to either attend the full 2-day retreat with their partner or they can attend the Sunday only afternoon couples and T3 sessions.