There is a lot of energy in the Down syndrome community as we prepare for World Down Syndrome Day (WDSD) on March 21st! Down Syndrome International encourages our friends all over the world to choose your own activities and events to help raise awareness of what Down syndrome is, what it means to have Down syndrome, and how people with Down syndrome play a vital role in our lives and communities.
LuMind RDS always joins the conversation and this year we are raising our voices to say #lumindrdsCARES! We believe every person living with Ds deserves a bright future, filled with limitless possibilities and the ability to become more independent. We believe Cognition And Research Empowers Success. Last year, you joined us on the ground at events and online for the 321 Virtual Run and 3:1 Match to help us raise nearly 50% of our annual budget to fund Down syndrome cognition research. Because of donors like you, we were able to award over $1.6 million dollars in grants to 7 out 20 research project applications. Amazing!
Please join us again this year, at any of the upcoming events listed below and raise your voice with us for World Down Syndrome Day to show we care. And, when you post your joy on social media, tag us with #lumindrdsCARES.
3:1 Match on donations. Our very popular inspiration challenge is back! Donate anytime on Sunday, March 19, Monday, March 20, or Tuesday, March 21 and your donation will be matched 3:1 thanks to a generous supporter. As we like to say “You have 3 days 2 make 1 donation!”
This means a $25 donation becomes $100, a $100 gift expands to $400, and a $1000 grows to $4000! So please consider making a tax-deductible donation on March 21st so we can take advantage of this generous 3:1 match from our founder.
Remember to tag us with #lumindrdsCARES when you post, tweet, and share on social media sites so we can show everyone we CARE about creating opportunities for individuals with Down syndrome!
Educational Webinars & Conferences
Feb. 24: Caring for Adults with Down syndrome — 162 registered guests!
Recording will be available on https://www.lumindrds.org/learn/webinars-and-presentations/ by March 10.
Dr. William Mobley of the University of California, San Diego shared the latest on his decades of research on the neurobiology of cognition in Down syndrome and the Down syndrome link with Alzheimer’s disease. Dr. Mobley discussed why he cares about this research and why he believes families of loved ones with Down syndrome should care as well. He provided updates on the AC Immune clinical trial and where parents might be able to contribute to research by registering with the clinical trial sites. He answered questions from families giving them all a better understanding of what we have learned with his research and where his current research will take us.
Sandra Assimotos McElwee, an advocate, author, and mother of celebrity, Sean McElwee of the emmy award winning show, Born This Way, shared her experience fostering the independent living situation Sean is in today. In her book series, Who’s A Slow Learner, Sandra shared all that she’s learned about life after caring for a loved one with Down syndrome. She shared some great tips and tools that she has used to give Sean his independence while guaranteeing his security.
March 9: Down Syndrome Cognition Research: A Dad’s Perspective
12:00 PM EST
In this webinar, Mike Mannor will talk about why he is so excited about Down syndrome cognition research from a parent’s perspective. Mike will talk about what types of research are currently being pursued, where research has shown the most potential, and highlight potential directions for the future. As a father of five and a Down syndrome dad, he will also share his personal experience of getting involved – first through his local affiliate organization and then directly supporting research – and offer suggestions on how others can find ways to support research. In Mike’s case, his excitement about the possibility of improving opportunities and independence for people with Down syndrome led him to rally a few other Down syndrome dads to start a fundraiser to support research and then to join the board of the LuMind RDS Foundation to help promote research further. Hosted by the DSAIA, this webinar is open to members and nonmember Ds organizations and the public.
March 18 & 19: Alexander’s Angels 10th Anniversary & WDSD Celebration
Feat. DOWNrightART Exhibit — March 18 @ 1 p.m. | March 19 @ 10 a.m.
Location: Gallery at Castello Di Borghese Winery in Cutchogue, NY and Long Island Aquarium
Alexander’s Angel’s takes DSi’s invitation to highlight the talents and value of individuals with Down syndrome to another level beginning with the DOWNrightART Exhibit that in 2017 is open from March 18 through 22. This unique gallery exhibit showcases works of art in a variety of mediums from a global list of artists with Down syndrome. Visitors get a new appreciation for the talents and commitment individuals with Down syndrome are capable of through the oeuvres d’art of local Long Island artists and others from as far as Poland to Mexico and California. On March 19, children and adults are treated to Star Wars characters and activities at the Long Island Aquarium where the Youth/Self-Advocate group lead an entertainment event. As a long-time partner in the commitment to funding cognition research, Alexander’s Angels donates a sizable portion of the proceeds of both events to LuMind RDS to support the research selected by the SAB. Staff is always honored to be invited to share in this amazing activity and you will see one or more of us there to cheer on this incredible production.
March 21: 6th World Down Syndrome Day Conference
10 am – 1 and 3 pm — 6
Location: Trusteeship Council Chamber, United Nations Headquarters, New York, USA
Author, advocate, blogger, and LuMind RDS volunteer, Marla Murasko, was selected to speak at the 6th Annual World Down Syndrome Conference on March 21st at the United Nations in NYC!
As part of Dsi’s #MyVoiceMyCommunity, Marla will a panelist of the ‘How Do You Advocate?’ session sharing her personal advocacy expertise which has led to her author a book, articles for the Huffington post, and to establishSpecial-and-Determined.com and SpecialMomsMagazine.com. This session is dedicated to identifying those who make and implement policies, deciding where best to advocate and choosing the type and style of advocacy campaign that suits your needs. Advocating for her son, Jacob, has given Marla a great deal of experience to share with others. More importantly, her work is a reminder of what can be accomplished when you persevere!
Light the Way Campaign
LuMind RDS is excited to share that First Lady Mary Pat Christie of New Jersey is celebrating World Down Syndrome Day by spearheading a special initiative, the Light the Way Campaign. This campaign will shine the light on the advances being made in cognitive research for Down syndrome, recognizing the discoveries that have been made as a result of LuMind RDS-funded research projects.
On the evening of Tuesday, March 21st, as part of the Light the Way campaign, New Jersey will light the Governor’s Residence, Drumthwacket, in blue in recognition of Down syndrome cognitive research. First Lady Christie has invited all the First Spouses to participate in a variety of creative ways such as wearing the color blue, lighting a prominent state monument blue, issuing proclamations in support for Down syndrome, and tying a blue bow around their State House door. Many joined First Lady Christie in 2016 and we are hoping to have an even bigger turnout this year.
Please join us and First Lady Christie in celebrating the Light the Way campaign by incorporating the color blue into your communities and homes, and promoting the theme “We Care” by using #LumindrdsCARES in your photos or social media posts. With your help in spreading awareness for LuMind CARES (Cognition and Research Empowers Success), we can
support and advance cognition research for individuals with Down Syndrome so they can participate more fully and successfully in school, lead independent lives, and avoid the early onset of Alzheimer’s disease. We are so grateful for the support of First Lady Christie, all the First Spouses, and individuals like yourselves in celebrating World Down Syndrome Day!
321 Virtual Run = Any Activity + 3.21 Theme
In 2013, Siobhan Pritchard created the World Down Syndrome Day 321 Virtual Run for LuMind RDS for anyone, anywhere to “actively” support people with Down syndrome because she cared. Well, the LuMind RDS Runners are back at it again this year with teams starting to register teams to raise funds and awareness with local 3-2-1 themed activities. For example, Kathleen Foley’s team starts with her son, Jack who has Ds, walking 1 mile every day in March with his aunt. Their family and friends are supporting them with $21 dollar donations for each mile to help LuMind RDS reach a $21,000 fundraising goal to get the 3:1 match. It’s a big party and virtually anyone can join in with a 321 activity in their community.
Start by registering yourself in the 321 Virtual Run with LuMind RDS. Once registered, LuMind will send you instructions to create your fundraising page with your 321 theme so you can begin sharing with everyone you know. All funds raised by March 21st will be available for the 3:1 match! This year, for a little competitive fun, we’ve added special prizes for the Top Individual Fundraiser, Top Team Fundraiser, Most Creative 321 Theme and Most Creative Ask chosen by the LuMind RDS Board Members, and the Largest Audience Outreach. Learn more at http://events.LuMindRDS.org/321VirtualRun.