March 21, 2019 3:21 p.m. EST Burlington, Mass. – As millions all over the world celebrate World Down Syndrome Day on March 21, two non-profit organizations are taking it one step further. LuMind Research Down Syndrome Foundation (LuMind RDS) and the International Down Syndrome Community (IDSC) announced today that they have combined operations, effectively merging the two organizations, to reach more families with combined services of support, education and accelerating research and medical treatments for people with Down syndrome.
“We are thrilled to share the news on a day when the world is focused on amplifying awareness and opportunities for those with Down syndrome,” said Hampus Hillerstrom, President/CEO of what is 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.
According to Hillerstrom, 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 their goals, they 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 they 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.
“Rapid growth of the group membership confirmed the importance of meeting this need within the community. It was clear that we could have a bigger impact as one organization,” said Beth Sullivan, Senior Director of Community Engagement, and former Chairman of IDSC. “We can’t wait to hit the ground running and begin our combined work to empower and connect families, increase research awareness and accelerate research that will ultimately benefit all of our families.” 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 the talented teams and volunteer leadership of both organizations. Hampus Hillerstrom leads LuMind IDSC as President and CEO. Beth Sullivan is the Senior Director of Community Engagement and Michelle Slape is the Director of Great Wolf Lodge Events and Special Projects. In addition, IDSC Board members and volunteers Linda Nargi, Maria Dellapina and Jennifer Smolka join the LuMind IDSC Board of Directors.
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 www.LuMindIDSC.org and contact LuMind IDSC at JoinOurMission@LuMindIDSC.org to get involved.
About LuMind IDSC:
The LuMind IDSC Foundation envisions a world where every person with Down syndrome thrives with improved health, independence, and opportunities to reach his or her 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.
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