Under one roof: LuMind Research Down Syndrome Foundation and Massachusetts Down Syndrome Congress work together for the Down syndrome community

Categories: Blog, News

BURLINGTON, MA — (October 22, 2018) — LuMind™ Research Down Syndrome Foundation (LuMind RDS) and Massachusetts Down Syndrome Congress (MDSC) are now neighbors working together for the greater good. On October 1, LuMind RDS moved its headquarters to Burlington – in the same building where MDSC has been headquartered since 2011. This move provides new opportunities for these two organizations to collaborate and better serve the Down syndrome community in Massachusetts and beyond.

In this collaboration, LuMind RDS is providing educational research materials, webinars and presentations. MDSC is leveraging its expertise as the premier organization for Down syndrome information, networking and advocacy in Massachusetts.

“We are thrilled to partner with LuMind on this meaningful collaboration that will bolster our longstanding mission of serving people with Down syndrome and their families across the lifespan,” said Maureen Gallagher, Executive Director of MDSC. “With exciting research initiatives on the horizon, we are committed to ensuring that the Down syndrome community in Massachusetts and beyond can continue to rely on MDSC for fully-vetted resources, accurate up-to-date information, and advocacy for full inclusion and participation in society.”

Over the past 35 years, MDSC has been a leader in creating innovative programs that empower individuals, families and professionals with knowledge and support to enable people with Down syndrome to lead fulfilling lives in the community. MDSC programs and best practices have been shared with individuals and organizations in 35 states and 5 countries. The MDSC’s new education, policy and parent support Centers of Excellence will continue to expand the reach of these resources.

Empowering families to learn, share and connect is a key part of LuMind RDS’ mission. The Foundation was established in 2004 by a group of families who wanted more research focused on improving the lives of individuals with Down syndrome in addition to the support and services that organizations like MDSC provide to the community. Since then, LuMind RDS has granted more than $18 million to fund research leading to 15 clinical trials or observational studies to advance understanding of Down syndrome and to identify and test new treatment options to improve sleep, memory, speech and prevent the early onset of Alzheimer’s disease. Today, the Foundation is focused on four research areas: prevent the early onset of Alzheimer’s disease, improve cognition and independence, develop gene therapies and advance understanding.  “In the next 2-5 years, promising drugs and interventions that will eventually provide families with more options to improve their loved one’s health and independence will be ready to enter clinical trials,” says LuMind RDS president and CEO, Hampus Hillerstrom, “Families and healthcare providers should have simple access to the latest evidence-based research information and opportunities.”

Together, the two organizations provide one-of-a-kind access to a broad network of families and professionals through MDSC and expanded research and resources through LuMind RDS in one convenient location. For more information on this collaboration, visit www.LuMindRDS.org and www.MDSC.org.

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About LuMind Research Down Syndrome Foundation:

LuMind Research Down Syndrome Foundation is dedicated to enable independence and enrich community engagement for all individuals with Down syndrome by identifying and accelerating high impact research.

Established in 2004, we have awarded $18M in research grants to fund groundbreaking projects at top academic institutions and biopharmaceutical companies leading to more than $50M in concurrent funding from the NIH, industry and other sources. LuMind RDS-supported research has led to the discovery of 10 therapeutic targets, the development of 3 Down syndrome-specific cognitive assessment scales, 15 interventional and observational clinical trials with more than 1300 participants and the initiation of several consortia.

About Massachusetts Down Syndrome Congress
For 35 years, MDSC has provided information, networking opportunities, and advocacy for individuals with Down syndrome and their families. Today, the MDSC offers a broad array of programs to serve people with Down syndrome and their families throughout the state, including: our signature Parents First Call Program, a volunteer, statewide group of trained parent mentors available 24/7 that is a national model; two major annual conferences that draw national and international experts in their fields; a Buddy Walk® Program that includes 3 Buddy Walks throughout the state; public awareness initiatives like the Your Next Star campaign, which is opening the eyes of employers to the value of employees with Down syndrome; and Self-Advocate Programs like Advocates in Motion, our Self-Advocate Advisory Council, and our Allen Crocker Self Advocate Internship, all of which provide opportunities for teens and adults with Down syndrome while making empowerment a central component. The MDSC is now disseminating these best practices through development of Centers of Excellence in the areas of education, public policy and family support.


Inquiries

Marly Chevrette | Mobile/Text: 603-828-8857 | Email: mchevrette@lumindrds.org
Joshua Komyerov | Phone: 781-221-0024| Email: jkomyerov@mdsc.org