Aug
30
Thu
Webinar: Parental Perspectives on Down Syndrome Research and 5 Ways to Rally for Research
Aug 30 @ 2:00 pm – 3:00 pm

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

2pm EST

Register at http://bit.ly/DsFamilySurvey 

 

More than 200 parents shared their attitudes, knowledge, priorities and perspectives on Down syndrome research. Learn how they align to the current Down syndrome research and what we need to do to work together to get results.
Sep
6
Thu
Rockin’ It Run 5K @ DSDN Conference @ JW Marriott Desert Ridge
Sep 6 @ 8:30 pm – 9:30 pm

 

Join LuMind RDS &  DSDN

and light up the night with us at the 2018 ROCKIN’ IT Run 5K.

 

Rockin’ It Run 5K
JW Marriott Desert Ridge Phoenix, AZ
Thursday, Sept. 6, 2018
8:30 pm

Runners and walkers are welcome for an evening filled with glow sticks, dunk tank, auction items – and great music for a great cause. You will be joining a vibrant community of runners who are friends and family of a loved one with Down syndrome – or who just enjoy running for a great cause!  For more information on sponsorship or attending this event please contact Katie Coughlin.

Sep
18
Tue
Regression: Understanding a sudden loss of skills in children or young adults w/ Ds w/ Drs. George Capone and Brian Chicoine
Sep 18 @ 4:00 pm – 5:00 pm

Regression: Understanding a sudden loss of skills in children or young adults with Down syndrome.

September 18, 2018

Registration linkhttp://bit.ly/RegressionAndDs

 

Description:

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.

 

Presenters:

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.

 

Sep
20
Thu
Funding Futures New York @ City Winery
Sep 20 @ 6:00 pm – 9:00 pm

This past January, the sixth annual Funding Futures Chicago (FFC) event raised over $145,000 for LuMind™ Research Down Syndrome Foundation (LuMind RDS) to fund Down syndrome research. Funding Futures began in 2012 when a group of dedicated families in the Chicagoland area decided to host a fundraising event for LuMind RDS (then DSRTF) with live music, food, drinks and a silent auction. Since the first event, FFC has raised over $700,000 for LuMind RDS, and continues to grow. On September 20, Funding Futures New York (FFNY) will make its debut at City Winery in New York City.

“We are excited to bring this event to another city,” says Margie Doyle, Director of Development at LuMind RDS and co-founder of FFC. “Over the last six years, we’ve created a community in Chicago that supports and propels the advancement of Down syndrome research, and we look forward to doing the same in New York.”

The September event will be organized by a new committee established in New York City, comprised of parents, friends and family of children with Down syndrome and LuMind RDS supporters. The committee members include Genevieve Shaw Brown, Rachel Adams, Joan O’Neil Ipsen, Austin Gordon, Joey Orfini, James Orfini and Katie Peraino.

Proceeds from the Funding Futures events support research projects funded by LuMind RDS to prevent Alzheimer’s onset, improve cognition, develop gene therapy and advance understanding. Since 2004, the Foundation has provided $17 million in grants to fund research for individuals with Down syndrome at top institutions including University of California San Diego, Stanford University, University of Arizona, Johns Hopkins, Emory, MIT, and UCONN Health.

For more information on Funding Futures, or if you are interested in joining the Chicago or New York committee, please visit www.fundingfutures.us.

Sep
27
Thu
Free Teleconference Tomorrow: Financial planning for Ds
Sep 27 @ 2:00 pm – 3:00 pm

A lifetime of support:Planning for a
family member who has special needs

Thursday, September 27

2 p.m. EDT

Dial-in info:

Toll free: 1-866-747-5167

Direct: 1-704-665-0860

Passcode: 76495486#

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 michellyne.macdonald@ml.com

Oct
11
Thu
The Up of Down: An Insight Into the World of Down Syndrome @ Riland Auditorium
Oct 11 @ 1:30 pm
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

 

Oct
13
Sat
Down Syndrome Association of Connecticut Annual Convention @ Sheraton Hotel Hartford South
Oct 13 all-day
DSAC

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.

 

 

Dec
13
Thu
Webinar: Blazing a Trail for Down Syndrome Inclusion in Clinical Trials: What’s Next?
Dec 13 @ 1:00 pm – 2:00 pm

 

Watch this live webinar on Blazing a Trail for Down Syndrome Inclusion in Clinical Trials: What’s Next?

December 13, 2018

1pm EST

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.

 

 

Jan
19
Sat
Funding Futures Chicago 2019 @ Fitzgerald's
Jan 19 @ 7:00 pm – 11:30 pm

7th Annual Funding Futures Chicago!

Save the date and mark your calendar for Saturday, January 19th, 2019 from 7-midnight.

We are going to light up the night at Fitzgerald’s in our continued support of cognition research dedicated to improve learning, provide greater independence and prevent the onset of early Alzheimer’s disease for people with Down syndrome. Tickets available soon at www.fundingfutures.us

SILENT AUCTION – LIVE MUSIC – GOOSE ISLAND CRAFT BEERS – FABULOUS FOOD, WINE & SPIRIT

Feb
17
Sun
2019 Austin Marathon, Half and 5K @ Downtown
Feb 17 all-day

Join our Austin Half Marathon Team as we hit the pavement to raise money for Down syndrome research!!! Take on the streets of this great city in one of the best half marathons in the US.  Make your miles count with and chance to run free AND make a difference in the lives of people with Down Syndrome.

February 17th, 2019.  For more information visit our Austin Half Marathon Information Page.