LuMind IDSC was excited to be a part of the #AAIC2024 in Philadelphia over the past few days to learn more about recent advancements in dementia research. A special thank you to our exhibiting partner, The Rainwater Charitable Foundation, for joining us at this important conference!
LuMind IDSC Foundation
Non-profit Organizations
Burlington, Massachusetts 807 followers
We accelerate research to improve health and independence for all with Down syndrome and empower families with education
About us
LuMind IDSC Foundation envisions a world where every person with Down syndrome thrives with improved health, independence, and opportunities to reach their fullest potential. We accelerate research to increase availability of therapeutic, diagnostic, and medical care options. We empower families through education, connections, and support. LuMind IDSC is the largest online Down syndrome community and the leading organization supporting translational research for Down syndrome. We significantly empower families through webinars, information, online focus groups and regional recreational events. We partner with health and biopharmaceutical companies, academic institutions, NIH and other public institutions to create more opportunities for improved health and independence for all people with Down syndrome. In the last 15 years, we have granted $20 million to fill a funding gap for Down syndrome research, identifying several therapeutic targets to improve health and cognition. In 2018, LuMind 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, LuMind IDSC has provided online peer-to-peer support and caregiver resources to an international community of more than 250,000 members as well as provided regional recreational family events in the United States and Canada for more than 5,000 members. LuMind IDSC works diligently to meet the emerging needs of the Down syndrome community. We strive to reach families who are unaware of the significant research progress that needs their support to be translated to medicines and interventions while tackling a growing interest for quality research and medical care content and education for their followers.
- Website
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http://www.lumindidsc.org/
External link for LuMind IDSC Foundation
- Industry
- Non-profit Organizations
- Company size
- 2-10 employees
- Headquarters
- Burlington, Massachusetts
- Type
- Nonprofit
- Founded
- 2004
- Specialties
- Cognitive Development Research, Down Syndrome Research, Alzheimer's research, Develop Gene Therapies, and Advance understanding of Down syndrome
Locations
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Primary
20 Burlington Mall Road, Suite #200
Suite #200
Burlington, Massachusetts 01803, US
Employees at LuMind IDSC Foundation
Updates
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On this date 34 years ago, July 26, 1990, the Americans with Disabilities Act (ADA) was signed into law. This important civil rights law prohibits discrimination against individuals with disabilities in all areas of public life. Today, as we commemorate the anniversary of the #ADA, we look to the future. We will continue our mission to accelerate research to increase the availability of therapeutic, diagnostic, and medical care options and empower families through education, connections, and support so that every person with Down syndrome thrives with improved health, independence, and opportunities to reach their fullest potential. #AmericanswithDisabilitiesAct #downsyndrome #NationalDisabilityIndependenceDay #DisabilityPrideMonth
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Have you heard? Mount Sinai recently secured over $4 Million in a grant from the National Institutes of Health to study Alopecia Areata and Atopic Dermatitis in People With Down Syndrome. “Given how common inflammatory skin diseases are in this population, particularly atopic dermatitis and alopecia areata, we want to ensure that safe and effective treatments are available, and that we understand the effects that they have on immune modulation in people with Down syndrome,” said Dr. Emma Guttman. Read more about this first-of-its-kind clinical trial: https://bit.ly/3Sgo6HU
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BREAKING NEWS: "Every new treatment option that becomes available for Alzheimer’s disease is critically important for the Down syndrome community.” Yesterday, the FDA approved Eli Lilly and Company's new Alzheimer's treatment drug, now called Kisunla. Read on for information about this new drug and the impact on people with Down syndrome and their families. https://lnkd.in/g6-Gs_qT
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The day we have been waiting for! A major pharmaceutical company has announced that the Down syndrome population will see a clinical trial of a new Alzheimer’s drug. People with Down syndrome will be invited to participate in a clinical trial of donanemab, the anti-amyloid Alzheimer’s drug developed by Eli Lilly and Company (Lilly). The news was announced in comments by Lilly’s Chief Medical Officer, David Hyman, MD, during a U.S. Food & Drug Administration (FDA) Advisory Committee meeting on the status of the drug. Read more online: https://lnkd.in/esbnXFVv #DownSyndrome #AlzheimersDisease #DownSyndromeResearch
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Did you know that 90% of the Down syndrome population will receive an Alzheimer's diagnosis at some point in their lifetime? Advancements are being made to slow the progression of Alzheimer's Disease, but the Down syndrome community is being left behind. For Alzheimer's Awareness Month, we ask that you to join us in raising awareness of the injustice that our #downsyndrome community is facing. We believe people with Down syndrome deserve equal access to, and insurance coverage for, life-changing drugs. Do you? Sign the online petition today: https://medequity4ds.org/ #alzheimers #downsyndrome #downsyndromeawareness
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The gastrointestinal (GI) system is involved in the digestion of food. Did you know that people with Down syndrome are more likely to experience medical conditions that interfere with digestion including: *Constipation *GERD (reflux) *Celiac Disease A medical doctor or GI specialist can manage many of these conditions, along with a healthy diet and exercise. #WorldDigestiveHealthDay #downsyndrome
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ICYMI: Our recent Community Spotlight features a mother's personal story about navigating a rare condition: Down Syndrome Regression Disorder. #Downsyndrome #DownSyndromeRegressionDisorder #HappyMothersDay
It was an honor to share our story with LuMind IDSC Foundation https://lnkd.in/egpCusVt
An Everyday Hero in Mom: Navigating Down Syndrome Regression Disorder
https://lumindidsc.org
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Exciting news coming out of the MassGeneral Hospital Down Syndrome Program! A four-year-old named Theo is now thriving after a breakthrough intervention by Mass General doctors to help treat his obstructive sleep apnea (OSA). Pediatric ENT specialist, Dr. Chris Hartnick (shown holding device) and Down Syndrome Program's Dr. Brian Skotko helped intervene when Theo's obstructive sleep apnea (OSA) began taking a toll on his health. Theo became a candidate for the FDA approved Inspire device and received the hypoglossal nerve stimulating implant in May 2023. While traditional interventions often fall short, the Inspire device has shown remarkable results in improving sleep and cognitive development. Theo is proof! OSA is prevalent in people with Down syndrome - early detection is key to treating it! LuMind IDSC Foundation is a proud supporter and early funder in the research of this device. You can learn more about the Inspire device and its potential to transform lives by clicking the link below. https://lnkd.in/ejbd9TyT
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It was a pleasure to be part of the 40th annual Massachusetts Down Syndrome Congress (MDSC) conference this past weekend in Worcester, MA. Congratulations to Mr. Omar Massood, a friend of LuMind IDSC and owner of Omar's World of Comics, who received a special award from the MDSC community. We want to offer special thanks to our panelists: Dr. Eric Rubenstein (Boston University SPH), Dr. Diana Rosas (Mass General Hospital), Dr. Brian Chicoine (Advocate Down Syndrome Clinic), Dr. Matthew Kennedy (Merck), and Dr. Li-Huei Tsai (MIT). Most importantly, we were so happy to welcome a self-advocate researcher who presented her team’s findings during our Research 101 presentation: Alexis Sokoloff! Alexis did a great job on the panel and we were very proud to have her. Congratulations to the Massachusetts Down Syndrome Congress (MDSC) for producing a spectacular annual conference; we're already looking forward to #41 next year! Our thanks to all those who stopped by our table, attended one of our workshops, and/or signed the Health Equity petition. It was a great day!