Merging IDSC and LuMind RDS 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.
As two separate organizations, each was 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. 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
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 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.
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
- empower you through education, connections, and support.
Who is leading the new organization?
The merger combines the teams and volunteer leadership of both
organizations. Hampus Hillerstrom will lead LuMind IDSC as President and
CEO. Beth Sullivan is 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 IDSC. In
addition, IDSC Board members and volunteers Linda Nargi, Maria Dellapina
and Jennifer Smolka join the LuMind IDSC Board of Directors.
What does the merger mean to researchers?
LuMind IDSC is strongly committed to quality, high impact research to
improve health and independence for all people with Down syndrome. As a
merged organization, LuMind IDSC will greatly expand our worldwide reach to
250,000 family members through social media to increase the awareness of
DS research, educate families on the best medical practices and help promote
high quality and ethical medical science.
Increased research awareness will lead to a more informed community of DS
families who can be stronger supporters and advocates for research.
Researchers will have a connection to both families and the people with DS
who their research is intended to benefit and will be able to hear what families
need and value from new research. This merger is a game-changer for DS
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.