PHOENIX – (August 14, 2018) – One of the largest retreats for mothers of children with Down syndrome – Rockin’ Mom Retreat – is coming to the JW Marriott Desert Ridge Resort and Spa in Phoenix, Arizona September 7 – 9. Four-hundred women are expected at this annual event hosted by the Down Syndrome Diagnosis Network® (DSDN), the largest national organization supporting parents with a new child with Down syndrome. Its mission is to provide information, connections and support, especially in the early years. This year, DSDN is partnering with the LuMind Research Down Syndrome Foundation™ (LuMind RDS) to kick off the retreat on Sept 6 with a night-time glow run to raise awareness of individuals with Down syndrome and fund research to improve health and independence. “The whole weekend is powerful. It was life-changing for me, knowing that I could be in a room of more than 100 women and feel at home, not judged or criticized,” said Beth Swanson, a Rockin’ Mom from Michigan who is attending the retreat for the third time. “This year, we are excited to get the local community of sunny Phoenix Arizona involved in the Rockin’ It run to raise awareness for LuMind RDS and Down syndrome research.”
Three years ago, when Swanson and her husband welcomed their second child, Delphine, into the world, she was diagnosed with Down syndrome. The Swanson’s received little to no information from their doctors. DSDN connected her to a birth club group and LuMind RDS. Now, these two organizations are collaborating to educate families about the promising scientific research for Down syndrome and raise awareness in the community. Beth is thrilled about DSDN’s new partnership with LuMind RDS, a foundation focused on identifying and accelerating result-driven Down syndrome research and therapies. “The more studies that can be conducted, the more answers we’re going to get. There are so many questions across the board where the answer is just, ‘because they have Down syndrome,” she says. “That’s not an answer; I want to know, ‘why?’” LuMind RDS is dedicated to finding the ‘why’ through funding clinical trials that lead to scientific breakthroughs. By partnering with DSDN, the two organizations are serving the Down syndrome community as a whole.
All are welcome to run or walk in the Rockin’ It Run 5K on Thursday, September 6. The race begins at 8:30 PM at the JW Marriott Desert Ridge Resort and Spa. Registration open online at www.bit.ly/rockinitrun and is $35 for adults and $15 for kids. Family and friends are encouraged to come support the runners.
LuMind RDS’ mission is focused on research in four key areas: preventing the onset of Alzheimer’s disease, improving cognition, developing gene therapies and advancing understanding. “In the next 5 years, we expect multiple clinical trials with promising drugs and interventions to be underway that will eventually provide families with more options to improve their loved one’s health and independence,” says Hampus Hillerstrom, LuMind RDS’ CEO. “Research is the key to independence and breakthroughs are close. Now is therefore the time to rally behind and fund research.”
To learn more or donate, visit or www.LuMindRDS.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 $17M in research grants to fund groundbreaking projects at top academic institutions and biopharmaceutical companies leading to more than $40M 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 Down Syndrome Diagnosis Network
DSDN is the largest national organization supporting parents with a new child with Down syndrome. Its mission is to provide information, connections and support, especially in the early years.