LuMind RDS was “Livin’ the Dream” with Family at 2017 NDSC in Sacramento

Categories: Blog

#2017NDSC —

Best. Family. Reunion. Ever.

We randomly asked people at the Annual National Down Syndrome Congress (NDSC) Convention “What draws you and thousands of other people from across the globe to this gathering?” and the top answer was “It’s the best and biggest family reunion!” Whether you are new or a familiar face year after year, you’re immediately embraced by the people and the exuberant energy everyone brings to the convention. Nearly 2,300 families dominated the Sacramento Convention Center ready to learn, share and inspire each other to break through the challenges they may encounter as they pursue their aspirations.

We are so grateful to NDSC for organizing these amazing networking events for the Down syndrome (Ds) community. The #2017NDSC Convention Committee delivered on all fronts with great sessions serving a variety of interests for a large number of groups within the Ds community, including a significant platform for families to connect with organizations like ours to get the latest information about Down syndrome research. Volunteers served in a variety of capacities so participants could get the most out of the 4 days.

PARENTS learned from the best, as internationally known experts came to Sacramento and shared their knowledge across the life span of individuals with DS. The LuMind RDS team was busy all weekend talking about the Four Scientific Research Categories and the 2017-18 research projects funded by the recent $1.64 million in grants as families eagerly stopped by the booth to learn more about Down syndrome research.

The Down syndrome research conversation went beyond the booth with Dr. Adorno from Stanford joining the LuMind Resource Table at the Research Roundtable organized this year by our friends at Global Down Syndrome Foundation. Dr. Mobley from UC San Diego joined Dr. Melissa Parisi from the NIH and DS Connect to show families how researchers and families both use DS Connect to advance research and improve health outcomes. Families learned even more about the progress we reached through the UC San Diego Down Syndrome and Alzheimer’s research while attending Dr. Mobley’s interactive session on Sunday.

SIBLINGS, who continually take on a larger role in the lives of their loved ones with Ds, share and learn alongside peers, from each other, as well as from professionals. Last year, 9 year-old Lucas Helferich helped out promoting the LuMind RDS Runners program at the booth. This year, his amazing accomplishment completing his first 10K and raising over $600 as part of the LuMind RDS Any Race, Any Place Runners Program in honor of his sister, Kayla inspired other siblings to lace up their sneakers. Siblings were not the only ones to be inspired to take their first, second, or third steps towards improved health with exercise while raising awareness and much needed funds for Down syndrome research. The LuMind RDS Runners 3 Steps to Your First 5K produced by LuMind RDS volunteer, Brendan Aylward from Unified Health & Performance was a big hit with families who are looking for strategies to practice a healthier activities. Many loved the idea of motivating themselves by training to support Down syndrome research – game on!

Learning from each other at #2017NDSC

SELF ADVOCATES connected with over 300 friends from across the world to learn, share, become empowered and have an amazing time! Watching trailblazers like Katie Kremer, Tim Harris, Brad Hennefer, Kelderman Klassy Glass, Jennifer Kirsten White, Todd Eisenberg, Sean McElwee and the cast from Born This Way, and their families share the secrets of their success building a career and finding some independence to inspire others towards their own success reminded us of why our mission is so critical. With amazing community support and personal determination, these individuals challenged perceptions and overcame great obstacles for their accomplishments. The scientific advancements made by LuMind RDS prove that even modest cognitive improvements can have an enormous impact on those living with Ds and their loved ones. Uncovering opportunities for individuals with Ds to participate more fully and successfully in school, lead independent lives, and avoid other devastating illnesses commonly associated with Ds, such as the early onset of Alzheimer’s disease. As individuals with Ds are living longer lives, it’s our responsibility to ensure that no door remains unopened.

Here we come East Texas!

LuMind RDS believes every person living with Ds deserves a bright future, filled with limitless possibilities and the ability to become more independent. It is our goal to make this vision a reality by continuously pushing the boundaries of cognitive research and delivering much-needed resources to the most innovative and committed professionals in the field. And, we are excited to start raising awareness in more communities with the groups and individuals that we connected with over this weekend to drive more funding towards promising Down syndrome research.

“I was humbled by the number of families that came by to see what research is being funded for 2018.   It was so great to see all the families that want to help move research forward,” explains Katie Coughlin, LuMind RDS Special Event Coordinator, “My favorite part of the conference was being able to talk to people about our races, especially our Any Race, Any Place that lets people supports LuMind RDS through their local road races.”


And like every family reunion, after four tiring but fun-filled days, going home is bittersweet only made better because we know next year’s event is already in the works for Dallas, Texas! We can’t wait to do it all even bigger in Texas!