themighty logo

Two Leading Non-Profits Merge to Better Serve the Down Syndrome Community

As millions all over the world celebrate World Down Syndrome Day, I am thrilled to announce two non-profit organizations are taking it one step further.

LuMind Research Down Syndrome Foundation (LuMind RDS) and the International Down Syndrome Community (IDSC) are combining operations, effectively merging the two organizations in order to reach more families with combined services of support, education and accelerating research and medical treatments for people with Down syndrome. We are now LuMind IDSC Foundation.

This combination brings together the largest social media voice in the Down syndrome community with the leading organization supporting translational research for Down syndrome. Together, our combined resources can significantly empower families and create more opportunities for improved health and independence for all people with Down syndrome.

For the last 15 years, LuMind RDS has granted $20 million to fill a funding gap for Down syndrome research, identifying several therapeutic targets to improve health and cognition. Most recently, LuMind RDS launched the first clinical trial network — DS-CTN — to accelerate the development of treatment options for Alzheimer’s onset, sleep apnea and other prevalent conditions for people with Down syndrome. Since 2008, IDSC has provided online peer-to-peer support and caregiver resources to an international Facebook community of more than 250,000 members, as well as provided recreational family events in the United States and Canada for more than 5,000 members.

Both organizations were working diligently to meet emerging needs of the Down syndrome community. LuMind RDS was striving to reach families who were unaware of the significant research progress that needs their support to be translated to medicines and interventions. IDSC was tackling a growing interest for quality research and medical care content and education for their followers. Realizing the similarity in our goals, we began collaborating in 2018 on a survey initiative to identify the informational needs and priorities of families with loved ones who have Down syndrome.

In February 2019, we partnered to launch a Facebook support group — IDSC LuMind Research and Medical Care Group — with exclusive webinars led by researchers, curated medical articles and Q&As with clinicians. The combined organization will continue to provide informational support and engagement opportunities to meet the needs of all individuals with Down syndrome and their families.

The merger combines our talented teams and volunteer leadership of both organizations. Hampus Hillerstrom will lead LuMind IDSC as President and CEO. I am the Senior Director of Community Engagement and former Chairman of the IDSC. Michelle Slape is the Director of Great Wolf Lodge Events and Special Projects and former Executive Director of the IDSC. In addition, IDSC Board members and volunteers Linda Nargi, Maria Dellapina and Jennifer Smolka join the LuMind IDSC Board of Directors.

Below, we wanted to answer some questions you may have about how this merger will affect the Down syndrome community and our advocacy.

What is your new vision and mission statement?

The LuMind IDSC Foundation envisions a world where every person with Down syndrome thrives with improved health, independence and opportunities to reach their fullest potential.

LuMind IDSC will accelerate research to increase availability of therapeutic, diagnostic and medical care options and will empower families through education, connections and support.

What does the merger mean to our family? 

We believe that we can serve your family better as one organization. This merger brings together the largest social media voice in the Down syndrome community with the leading organization supporting translational research for Down syndrome. Together, our combined resources can significantly accelerate research to increase availability of therapeutic, diagnostic and medical care options for your loved one, and empower you through education, connections and support.

What does the merger mean to DS Affiliates?

The new merged organization, LuMind IDSC, is strongly committed to increasing opportunities for collaboration with and support for DS affiliates and your families. As a merged organization, we will provide online support groups, research webinars, better support for local participation in research and regional community events including our Family Weekend at Great Wolf Lodge to accelerate research and empower families to improve health, independence and opportunities for all people with Down syndrome.

LuMind IDSC is grateful to the management teams, boards and volunteers for their leadership and support in making this combination a reality, as well as the significant pro-bono contributions from the law firm Goodwin Procter to execute the transaction. For more information about the merger, please visit our site.

Image provided by LuMind IDSC Foundation