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!
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.
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
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.
You’re invited to join us for the most magical race weekend on Earth at Walt Disney World® Resort where your favorite classic Disney characters are the hosts! With race distances for all skill levels, including Kids Races, a 5K, 10K, Half Marathon and Marathon, participants will enjoy special Disney entertainment on course and earn one-of-a-kind Disney finisher medals. Plus, runners can take on race challenges to earn even more bling. Whether you’re a beginner or a veteran runner, everyone can experience the magic of running through Walt Disney World® Resort!
Webinar: Implant for Severe Sleep Apnea: Where are we now?
Join us for a free live webinar on Thursday, March 7 @4pm EST.
Find out more about hypoglossal stimulation and how it can be used to treat sleep apnea. The implant is currently FDA-approved in adults, but the clinical study led by Dr. Hartnick is focused on expanding access for children. Dr. Hartnick will also share a hypothesis with very preliminary data on how this might help with speech.
To register, visit http://bit.ly/SleepApneaAdvances
You’re invited to the Conference on the
Progress of Down Syndrome Research
Wednesday, March 20, 2019
We invite you to attend this great research symposium on March 20 @ 1:30pm in Mineola, New York organized by our friends at Alexander’s Angels featuring great research that has been supported by LuMind RDS. It’s a great opportunity to hear about progress in Down syndrome research directly from the researchers. The symposium is open to families and healthcare providers. Space is limited so you can reserve your spot today online at winthrop.cloud-cme.com.
The Up of Down: An Insight into the World of Down Syndrome is a Joint Provider Conference with Alexander’s Angels, Inc. and NYU Winthrop Hospital. The focus is to highlight the Down syndrome research progress and consists of speakers from a broad spectrum of specialties. Current findings will be presented by faculty from prestigious universities with affiliated hospitals on their campus. The conference will cover a wide range of topics including plans to explore a broad number of topics related to Down syndrome.
Roger Reeves, PhD.
Rethinking Alzheimer Disease in the Context of Down Syndrome
William Mobley, MD, PhD
Gene Dosage in Cellular Models of Trisomy 21
Stefan Pinter, PhD
Review the FDA Approved Study Looking at the Effect of Hypoglossal Nerve Stimulation in Treating Children Ages 10 to 21 with Down Syndrome and Significant Obstructive Sleep Apnea (OSA)
Christopher Hartnick, MD, MS
At the end of this symposium, learners should be able to:
• Discuss improvements in learning and memory in individuals with Down syndrome
• Assess and discuss why we see early onset Alzheimer’s in individuals with Down syndrome
• Explain research findings regarding cellular models
• Discuss common developmental and behavioral observations of individuals with Down syndrome
• Identify medical predispositions in individuals with Down syndrome
• Benefits of Hypoglossal Nerve Stimulation
• Discuss the effects of Down syndrome on the immune system
Please register at winthrop.cloud-cme.com
SPACE IS LIMITED. REGISTER EARLY.
NYU Winthrop Research & Academic Conference Center
101 Mineola Boulevard
Mineola, NY 11501
Registration is FREE and includes educational materials, refreshments and CME-CE credit certificate.
Join the WDSD 321 Virtual Run/Walk – Actively Support Ds Research
World Down Syndrome Day (3/21) and, here at LuMind Research Down Syndrome, we’re wondering how YOU plan to celebrate.
Won’t you join us in *actively* showing your support of Down syndrome cognition research by signing up to participate in the World Down Syndrome Day 321 Virtual Run/Walk event? This “virtual” event is an opportunity for people across the world to come together to advocate and self-advocate for persons with Down syndrome. We have a goal to unite a team of supporters across the world in raising funds for Down syndrome research by team fundraising throughout the month of March 2019.
To participate, we ask that you commit to taking part in some kind of physical activity throughout the month of March involving any sort of variation of the numbers 3-2-1. Then on WDSD (3/21) post pictures, or video, of your 3-2-1 activity on our Facebook Group. Participate on your own, or rally a team to help you participate and fundraise. After registering, we encourage you to set up your fundraising page and ask friends and family for their support. We have some great fundraising prizes for this year’s teams
Anyone who registers for the event will receive a cotton t-shirt and a medal, but only those registrations received before March 1 are guaranteed receipt of their shirt by March 21, 2019.
- Commit to walking or running 3.21 miles
- Swim 321 laps in the pool
- Hop on the elliptical or Stairmaster for 32.1 minutes
Don’t be afraid to get creative! We’ve had participants send us their photos of going for a run along Route 321 or commit to running 3.21 miles EVERY day throughout the month of March!
Whatever activity you decide to do from lacing up your running shoes, snap on your helmet, or dive in as part of the World Down Syndrome Day 321 Virtual Run/Walk and support cognition research!
Shaping the Future: The State of Down Syndrome Research Today
The 35th Annual Conference at the DCU Center in Worcester, MA on March 23rd.
We’re proud to partner with the Massachusetts Down Syndrome Congress (MDSC) team to collaborate and sponsor their first research-focused event for families — Shaping the Future: The State of Down Syndrome Research Today.
This year, the community will gather to delve deep into the promising developments in Down syndrome research and the exciting potential it has for the future with session topics including:
→ innovative clinical trials and studies underway nationwide that have promise to make a difference in people’s lives
→ the latest research on sleep apnea, nutrition and obesity behavior, inclusive education, clinical care medical and neurodevelopmental conditions, speech and language pathology, and Alzheimer’s disease
→ information on the latest groundbreaking research into “silencing the extra chromosome.”
→ how to participate in Down syndrome-specific research studies, including the National Institute for Health’s DS Connect portal.
The offerings address the needs of people with Down syndrome from childhood through aging adult with useful information for self-advocates, siblings, grandparents, support providers, education and medical professionals, and researchers.
To learn more and take advantage of the early-bird registration rates, visit the conference website before March 11.