Obstructive Sleep Apnea: Don’t let it get in the way of cognitive potential!
Live webinar with Dr. Brian Skotko from the Mass General Hospital Down Syndrome Program and Dr. Christopher Hartnick from Mass Eye and Ear
Wednesday, April 25, 2018
Don’t let obstructive sleep apnea (OSA) get in the way of cognitive potential! OSA occurs in nearly 3 out of every 4 people with Down syndrome. Symptoms are often silent, with no warning to caregivers and clinicians. Untreated sleep apnea may result in worsening medical issues and loss of cognitive functioning. Register now at http://bit.ly/321Sleep for this live webinar on April 25th to learn about the latest ways to detect apnea in persons with Down syndrome and new advances in how to treat obstructive sleep apnea led by Dr. Brian.Skotko from MGHDownSyndrome and Dr. Christopher Hartnick from MassEyeAndEar. A webinar not to be missed for every parent or caregiver!
Watch this live webinar for perspectives on Alzheimer’s Disease biomarkers in Down syndrome from leading experts, Dr. André Strydom and Dr. Juan Fortea, with the Londowns Consortium and the Down Alzheimer Barcelona Neuroimaging Initiative.
May 31, 2018
Register at http://bit.ly/AlzBiomarkers4Ds
|Dr. André Strydom (MRCPsych, MSc, PhD)
King’s College LondonDr. Strydom is a Professor in Intellectual Disabilities at the world-leading Institute of Psychiatry, Psychology and Neuroscience at King’s College London, where his research is focused on mental disorders in adults with neurodevelopmental conditions, including Down syndrome and other genetic disorders.Professor Strydom is particularly interested in ageing-related conditions such as dementia in adults with Intellectual Disability and Down syndrome. He is the chief investigator of the LonDownS consortium http://www.ucl.ac.uk/london-down-syndrome-consortium which consists of several research groups from prominent London universities (KCL, UCL, QMUoL, Birkbeck and the Crick Institute) working on various aspects of Alzheimer’s disease in Down syndrome. One of the important aims of the consortium is to deliver the knowledge, tools and expertise that is necessary to enable clinical trials of treatment to prevent or delay the onset of dementia in individuals with Down syndrome.
|Dr. Juan Fortea, Faculty Neurologist.
Hospital de la Santa Creu I Sant Pau and Fundació Catalana Síndrome de Down.Dr. Fortea has extensive experience in clinical practice and in medical research, whose focus is the early diagnosis of neurodegenerative diseases, particularly Alzheimer’s disease as well as its development in Down syndrome.Dr. Fortea’s PhD specialization was the study of pre-‐clinical Alzheimer disease in sporadic and familial cohorts through the use of multimodal MRI and CSF studies. Today, he is the principal investigator of multiple research projects in the field of Alzheimer’s disease and Down syndrome, and he leads the Neuroimaging Laboratory within the St Pau Memory Unit. One of his most significant contributions is the creation and implementation of a health plan for the screening of Alzheimer’s disease in adults with Down syndrome that includes longitudinal assessments and a comprehensive biomarker research program. This cohort is one of the largest in the world complete with multimodal biomarkers, including MRI and PET imaging, plasma and CSF as well as polysomnography tests.
Watch this live webinar on Pathways to Novel Cognition Targets with Potential to Help People with Down Syndrome with Dr. Craig Heller, PhD, Stanford
June 26, 2018
Register at http://bit.ly/DsResearchFromStanfordU
The ability to learn and remember is an important aspect of human life that is more difficult for individuals with Down Syndrome. Basic research, however, is leading to new approaches that have the promise of improving impaired cognitive functions. Some of these leads involve understanding the roles that sleep and daily rhythms play in our ability to form long-term memories. Other leads involve understanding and altering the neurochemical pathways involved in memory processing. Still other leads come from molecular knowledge of how genes triplicated in DS influence brain development. In his Webinar, Dr. Heller will discuss recent progress in these areas.
Research and Retreat Weekend 2018
One weekend, one location, lots of families, activities, learning and fun– all the weekend of
August 9-12, 2018 at the Cincinnati Great Wolf Lodge!
Watch this live webinar on Parental Perspectives on Down Syndrome Research and 5 Ways to Rally for Research with Nicole White, PhD Candidate, Antioch University
August 30, 2018
Register at http://bit.ly/DsFamilySurvey
Regression: Understanding a sudden loss of skills in children or young adults with Down syndrome.
September 18, 2018
Registration link: http://bit.ly/RegressionAndDs
Regression is an unusual loss of previously acquired functional skills along with significant changes in behavior and personality. When it occurs, it most commonly occurs in teens and young adults but may occur in younger and older ages. Learn more about the known signs, causes or triggers and current research from two leading clinical experts, Drs. George Capone and Brian Chicoine, with over 20 years of experience providing medical care for children and adults with Down syndrome.
Dr. Capone shares the knowledge he has gained at the Kennedy Krieger Institute evaluating children who experience a dramatic loss (or plateauing) in their acquisition and use of language and social-attending skills. He will discuss when these changes could be signs of a co-existing autism disorder or other behavioral or psychiatric conditions such as ADHD, OCD or mood disorder.
Based on his extensive knowledge and many years of practical experience, Dr. Chicoine will discuss the evaluation of sudden functional changes in younger adults with Down syndrome in the context of regression and Alzheimer’s and suggest ways to thoughtfully approach these changes.
George T. Capone, M.D.
Dr. George Capone is an associate professor of pediatrics at the Johns Hopkins University School of Medicine. Dr. Capone is committed to research that explores the neurobiologic basis of cognitive impairment and co-morbid neurobehavioral and psychiatric disorders associated with Down syndrome.
He is also a research scientist and director of the Down Syndrome Clinic and Research Center (DSCRC) at Kennedy Krieger Institute, as well as an attending physician on the institute’s comprehensive rehabilitation unit.
Brian Chicoine, M.D.
Dr. Chicoine is the Medical Director of the Advocate Adult Down Syndrome Center in Park Ridge, IL. He is on the faculty of Family Medicine at Advocate Lutheran General Hospital. Dr. Chicoine is the cofounder of the Adult Down Syndrome Center that has served and documented the health and psychosocial needs of over 6000 adolescents and adults with Down syndrome since its inception in 1992.
A lifetime of support:Planning for a
family member who has special needs
Thursday, September 27
2 p.m. EDT
Toll free: 1-866-747-5167
Long-time LuMind RDS friend and supporter, Elizabeth McKenna, CFP, ChSNC, is hosting a complimentary webinar/teleconference along with Shirley B. Whitenack, Esq., to discuss financial planning for a family member who has special needs. McKenna, a Wealth Management Advisor at Merrill Lynch, and Whitenack, Co-Chair Elder & Special Needs Practice at Schenck Price Smith & King, LLP, will discuss some of the potential financial, social and legal issues facing parents who have a family member with a disability.
They’ll also talk about strategies for:
- Putting in place the things you want to happen now and after you’re gone
- Helping ensure your loved one’s current quality of life through supplemental income while maintaining government benefits
- Preserving your estate for your family or charitable organizations
• Balancing your financial goals for the benefit of your loved one with a disability and your entire household
For further information call Michelle MacDonald at 973-301-7645 or email firstname.lastname@example.org
Don’t miss an informative symposium highlighting Down Syndrome Research progress The Up of Down: An Insight Into the World of Down Syndrome Established by Alexander’s Angels, Inc. in 2007
This program is co-hosted by Alexander’s Angels, Inc. and New York Institute of Technology (NYIT) NYIT College of Osteopathic Medicine Riland Auditorium Old Westbury, NY 11568 Thursday, October 11, 2018 Time: 1:30 p.m
Please join us for dinner after the symposium.
At Libon Café, Jericho – Price $45
Send cash or check to Alexander’s Angels, Inc.
425 N Broadway #486, Jericho, NY 11753
Join LuMindRDS at the 33nd DSAC Convention on October 13th at the Sheraton Hotel Hartford South
Hampus Hillerstrom, President and CEO of LuMindRDS will be presenting “On the Verge of Research Breakthroughs”: Why We Should Be Excited & Rally Now. Our community, the public and the pharmaceutical industry once thought that therapies to improve health and independence in all ages with Down syndrome (Ds) are too complex. Learn about the recent scientific breakthroughs that challenge this thinking.
- Alzheimer’s therapies can soon be tested in people with Ds
- Silencing genes of concern is closer to becoming reality
- Digital medicine approaches may be prescribed to improve neurocircuitry
- Anti-inflammatory approaches may benefit Ds
- Other breakthroughs are ready for rigorous development
Stop by our booth to learn more about the exciting research that is getting closer to clinical trials and the new LuMind RDS initiatives for the Down syndrome community.
To find out more information about the conference, go to the DSAC website at mydsact.org Our thanks to DSAC for inviting LuMindRDS and for the conference committee for their exceptional work organizing this conference.
Watch this live webinar on Blazing a Trail for Down Syndrome Inclusion in Clinical Trials: What’s Next?
December 13, 2018
Click Here to register
Now that Down syndrome research is ready for clinical trials, LuMind RDS is tackling the challenges that prevent individuals with Down syndrome from being included in trials.
In our upcoming webinar on December 13, James Hendrix, LuMind RDS Chief Scientific Officer, reviews the opportunities and challenges of the clinical trial process, from Phase 1 to FDA approval, and why DS-CTN is a game changer.
This webinar will provide families with a clear understanding of what to expect as we enter this exciting next step towards safe and effective interventions to improve health and independence for all individuals with Down syndrome.