At the 2018 Down Syndrome Affiliates in Action Conference, LuMind RDS is launching the Down Syndrome Research Community, a research and medical care online community for families and caregivers
For immediate release – Denver, CO: LuMind™ Research Down Syndrome Foundation (LuMind RDS) is pleased to announce the launch of Down Syndrome Research Community (DSRC), an online site designed to provide a social network for families and caregivers of individuals with Down syndrome as well as the organizations that support them. DSRC will provide secure access to crowdsourced information from the Down syndrome community, as well as cutting-edge information on research and treatments. This launch took place at the 2018 Down Syndrome Affiliates in Action Conference in Denver, Colorado, which was attended by more than 60 Down syndrome organizations.
DSRC uniquely combines the simplicity of Facebook with the reporting power of big data. Its objective is to facilitate improved health by sharing knowledge among the Down syndrome community. According to Hampus Hillerstrom, LuMind RDS’s CEO, who is also a parent of a child with Down syndrome, “Making sense of Down syndrome research and medical care standards is a daunting task for families. With all the information available in one place, we believe that DSRC will go a long way in filling this gap.”
LuMind RDS has worked with GeneFo, the brainchild of Stanford geneticist Dr. Yael Wilnai, to create a single online space where Down syndrome families can learn from each other. Participants will have access to the latest information on research and scientific milestones and free monthly webinars based on participant’s interest. They can also post questions about medical care and research, and share responses with one another.
Once families and caregivers register a DSCR profile, they are prompted to complete a general questionnaire that captures information about diagnosis, developmental milestones, symptoms, procedures, and treatments. Health updates can be added over time. DSRC maintains a confidential personal health history chart for each participant, which they can share with their healthcare providers. In addition, data from all DSRC participants is aggregated and summarized in easy-to-read charts and graphs. This will allow members to gain insights about screening, onset of symptoms, efficacy and side effects of medications and medical procedures.
The DSCR has been evaluated by a small group of early adopters who have responded in a very positive way. “During beta testing, we have already seen many benefits. Based on feedback from the site, one parent learned valuable information about the effectiveness of a treatment from another post,” Hillerstrom said.
Hillerstrom added, “We’re very excited to bring this unique resource to the Down syndrome community. We see this network filling an educational gap for families and caregivers who strive to provide the best health and independence outcomes for their loved ones with Down syndrome throughout their lifetime by staying on top of medical and research advances. As administrator of this community, LuMind RDS will strive to provide factual update on the latest research breakthroughs and gradually add more value-added services to this community.”
Sandra McElwee, mother of Sean from “Born This Way,” the A&E reality show with 7 individuals born with Down syndrome, is enthusiastic about this resource. “It’s fantastic to have access to a social media platform that focuses on health-related discussions with graphs and charts along with information provided by LuMind RDS,” said McElwee.
GeneFo’s CEO Neer Ziskind, her co-founder, described the network as a mix of Facebook and Fitbit. LuMind RDS joins other successful GeneFo sites, including cystic fibrosis, multiple sclerosis, Huntington’s disease, PKU, and Ehlers-Danlos syndromes.
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About LuMind Research Down Syndrome Foundation
We hope to meaningfully improve health and independence in people with Down syndrome through cutting-edge science. Established in 2004, we have invested $17M to top academic institutions and biopharmaceutical companies leading to substantial concurrent funding from the NIH, industry and other sources. LuMind RDS-funded research has led to the discovery of 10 therapeutic targets, 2 Down syndrome-specific cognitive assessment scales, and 14 interventional and observational clinical trials in 1300 participants.
LuMind RDS partners with industry and academic institutions to rapidly and successfully translate research into treatments, drugs and interventions. We have already supported 14 trials to date with 1300 participants. We have established a focused research agenda based on four Down syndrome research priority areas, including research targeting the root cause of Down syndrome as well as symptoms: 1) Prevent Alzheimer’s onset, 2) Improve cognition, 3) Develop gene therapies, and 4) Advance understanding.
To learn more about LuMind RDS research, visit www.LuMindRDS.org or visit events.lumindrds.org/donate to help fund Down syndrome research.