Tribute 21 – The 2nd Annual Masquerade Ball Benefiting RDS and the Tribute 21 Fund

Thanks again to Erin and Brendan Fry, and the entire Host Committee for Tribute 21, for the Second Annual Masquerade Ball Benefiting Research Down Syndrome and the Tribute 21 Fund, held on November 7 in Washington, DC.

Some pictures from Tribute 21 2014 are shared below, and here is a link to all the pictures, thanks to Bridget Conley, Jennifer Lust and Caitlin Taylor!

The evening's success is due in large part to our sponsors, who were so instrumental in making the evening such a resounding success….Thank You!

What an amazing night. Let's do it again.  We look forward to seeing you in 2015!

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Inaugural 24-Hour Relay Run For Research

Research Down Syndrome thanks the 24-Hour Relay Run for Research organizers Lisa Arnoa and Matt MacDougall, and all the runners who participated in this RDS fundraiser held in Clark, NJ on Friday and Saturday, June 13-14. The team members took turns running a 1 mile loop, before passing off the baton to the next runner. Over the 24 hour period, the runners accumulated 157 miles, which were sponsored by individual donors and businesses.

Matt shared these thoughts about the experience:

Considering we had to deal with torrential downpours, thunder, and lightning on Friday, followed by heat, humidity, bugs, and oh yeah…an inebriated old man wandering into our event, I'd say this event couldn't have gone better!  

As we rolled into a beautiful Saturday at Oak Ridge Park, I was humbled as I stood back and watched people from all walks of life and different backgrounds come together and become part of something our grandchildren will be proud of!  Every person who was there could feel the positive vibe…the energy…the love that came from 25+ runners who ran their hearts and souls out for Research Down Syndrome.  I wanted this to be something that everyone could be a part of…I am pretty sure I got my wish.

PS –  A side note:  My wife told me that my 5 year old Zach was so excited to run on Saturday…when he got there he told me "Daddy, I'm gonna run to help people too!"  My heart melted and tears came to my eyes. (RDS says, “Thank you Zach!”)

And Lisa, mom of eight year old Sal, who has Down syndrome:

Thank you so much for being part of such an incredible event with awesome people. Sal and I thank each and everyone who dedicated there time in making this event possible. Matt great job my friend so appreciate all that you have done for RDS.

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We’re sure Lisa and Matt would be happy to share their experiences and “how to” advice to anyone who would wish to organize a similar 24-Hour Relay Run for Research. It would be fantastic to see local groups plan a similar event later this year, or perhaps on the same weekend as this event next year.

Again, RDS thanks Matt, Lisa and all the other runners for such tremendous enthusiasm and support of Down syndrome cognitive research. It is events such as this that are helping move research investment into the everyday discussions on Down syndrome advocacy.

First Lady Mary Pat Christie Announces Drumthwacket To Light the Way On March 21 To Recognize National Light The Way Initiative

Thank you First Lady Mary Pat Christie for your continuing advocacy in support of Down syndrome cognitive research!

Trenton, NJ – Raising awareness of advancements being made in Down syndrome cognitive research, First Lady Mary Pat Christie has announced that the Governor’s Official Residence, Drumthwacket, will be illuminated in blue Friday evening, March 21, to support the national Light the Way initiative. 

“I am pleased to once again participate in the national Light the Way effort,” said Mrs. Christie. “Vital research being done by organizations like Research Down Syndrome (RDS) are responsible for quality of life improvements for thousands of individuals with Down syndrome and their families here in New Jersey and across the country. Equally important, these advancements are empowering people with intellectual disabilities to live more independent and fulfilling lives.” 

Light the Way is annually observed on World Down Syndrome Day, March 21, 2014. The date is meaningful because Down syndrome results from the presence of three copies of chromosome 21. Down syndrome is the most common chromosomal disorder, affecting over 400,000 in the United States. It occurs in approximately 1 in every 700 births. 

Down syndrome cognitive research is a rapidly advancing area of research that holds great promise for improving memory, learning and communication for individuals of all ages with Down syndrome.  The goal of the Light the Way program is to expand awareness of Down syndrome cognitive research, including the efforts of the non-profit foundation RDS to fund this research.

 

World Down Syndrome Day Virtual Run/Walk

The 4th RDS Charity Golf Classic

The 4th Research Down Syndrome Charity Golf Classic presented by Brinks is SOLD OUT! 

The event was held on Thursday, April 10, 2014 at the Bridlewood Golf Club in Flower Mound, Texas. 

Read more in the brochure. 

Please note: Sponsorship opportunities as well as golfer entries are now sold out for the event. It is the sponsor’s responsibility to fill golf slots with its desired staff and business partners. Playing partners can be invited from any business or client! 

Please contact Paul Watson at 214-763-9685 or pjbwatson@yahoo.com for any sponsorship or individual golf registration questions.

Research Down Syndrome Presents Light the Way Award to Dr. Roger Reeves and Dr. Yvonne Maddox at Washington, DC Tribute 21 Event

The Research Down Syndrome (RDS) Foundation presented its 2013 Light the Way Award to Dr. Roger Reeves from the Johns Hopkins University School of Medicine and Dr. Yvonne Maddox from the National Institute of Child Health and Human Development at Tribute 21, the First Annual Masquerade Ball benefiting RDS. The award recognizes persons engaged in initiatives to assist individual empowerment. Previous award winners have included New Jersey First Lady Mary Pat Christie, Newark Mayor Cory Booker, and F. Hoffmann-La Roche Vice President Dr. Luca Santarelli.

 

Dr. Reeves, Professor in the Department of Physiology and the Institute for Genetic Medicine at the Johns Hopkins University School of Medicine, was recognized for his research which focuses on the mechanisms of gene action in Down syndrome. His efforts have contributed to significant breakthroughs in the field of Down syndrome cognitive research.

 

Dr. Yvonne Maddox, Deputy Director of the Eunice Kennedy Shriver National Institute of Child Health and Human Development has led initiatives to establish the National Down Syndrome Consortium and the National Down Syndrome Patient Registry.

The awards were presented November 9, in Washington, DC at Tribute 21, a fundraising ball hosted by Erin and Brendan Fry in memory of their son, Flynn Thomas Fry. The event supports scientific research that will, as Mr. and Mrs. Fry noted, “enhance life opportunities of all the loved ones with Down syndrome whom we are still so blessed to have in our lives.”

 

At the event, Research Down Syndrome recognized the contributions of Drs. Reeves and Maddox, and expressed its appreciation to Mr. and Mrs. Fry, the sponsors, the host committee and all of the guests for their belief in the promise of Down syndrome cognitive research. The Foundation noted that support through donations and events such as Tribute 21 has contributed to rapid progress in this remarkable research initiative. RDS grants and other support has led to the initiation of three clinical trials currently underway that are evaluating potential therapies to improve cognition in individuals with Down syndrome and address the increased likelihood of Alzheimer’s disease.

The featured speaker at the event was self advocate Mr. Eli Lewis. Mr. Lewis spoke about his journey through the public school system and his transition to adulthood. Mr. Lewis is currently employed at Project Search.

 

In addition to Mr. Lewis’ speech, the over four hundred attendees enjoyed music from the 19th St. Band and participated in an auction, which included a painting of the Jefferson Memorial produced live at the event by local artist Maggie O’Neill.

Tribute 21 – The 1st Annual Masquerade Ball Benefiting RDS

Thanks again to Erin and Brendan Fry, and the entire Host Committee for Tribute 21, the First Annual Masquerade Ball Benefiting Research Down Syndrome, held on November 9 in Washington, DC.

The hosts graciously allowed RDS at the event to recognize our 2013 Light the Way award winners, Dr. Yvonne Maddox of NICHD and Dr. Roger Reeves from the Johns Hopkins School of Medicine. 

Read more on the event here.

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Colorado Couple Competed in 100-Mile Endurance Run to Support Research Down Syndrome

Participating in an endurance running event that spanned two days across rugged Rocky Mountain terrain, Siobhan and Dan Pritchard raised over $35,000 for Research Down Syndrome. 

On August 17-18, the couple ran in the Leadville Trail 100-Mile Run. Over 900 runners competed in this legendary “Race Across the Sky”, 100 miles of extreme terrain, with elevations ranging from 9,200 to 12,600 feet. Siobhan was one of only approximately half the entrants who finished under the required 30 hours. Dan succeeded in reaching several time checkpoints, and completed 71 miles. “I will be back next year, and I will finish”, Dan said.

The Pritchards are parents to one-year old James, who has Down syndrome. Since his birth, the couple has strongly advocated for increased support of research that is directed toward developing treatments that will improve learning and communication in individuals with Down syndrome, and also address the increased incidence of Alzheimer’s disease.

Prior to the race, Siobhan reflected, “If there is anything I can do to help James succeed, then I want to push hard to give him these tools…open every door. I was thinking, what greater way to raise money and awareness of Down syndrome research than to run 100 miles. Sure, to some people this is crazy, but to Dan and me, this is just a small thing to what James and other persons with Down syndrome experience.”

After the race, Siobhan shared these thoughts, “Dan and I are so grateful for all the support, from our crew team and pacers, as well as from the Down syndrome community, the solidarity teams and all their donors. I ran the race with my heart on my sleeve, putting it all out there, knowing this was my one shot to make a statement for Down syndrome research. It was two days of perseverance and digging deep. Thinking, ‘It never always gets worse’, as I pushed through some tough moments. All these things are what James has taught me”. 

Supporting this fundraising effort were RDS Runners’ teams and other backers nationwide. RDS Runners is a national program of runners and racing events supporting Down syndrome research. One fundraiser in solidarity with Siobhan and Dan’s effort was “Lemonade Stands for RDS” in which young Kaydence and Jaycee raised over one thousand dollars selling virtual glasses of lemonade to support their good friend James. RDS congratulates Siobhan and Dan on this remarkable achievement. Thank you for your ongoing advocacy of Down syndrome cognitive research. In addition, the foundation thanks all the Run with Siobhan teams and donors who joined in solidarity with this event.

The Run with SIobhan campaign is not ending with the completion of SIobhan and Dan's effort. Teams continue to form, running, walking or participating in any type of event in solidarity to support RDS and Down syndrome cognitive research.

Learn about forming a team or contributing to this remarkable event here: http://www.crowdrise.com/RunWithSiobhan

                              Team Falanga Ran With Siobhan and raised $4,000!

RDS Runners Upcoming Races

The first half of 2013 has just flown by, and the foundation is privileged by all of the RDS Runners who participated in races during the first six months of the year, raising over $65,000 for Ds cognitive research.

To support Research Down Syndrome’s mission of funding research to improve memory, learning and communication in persons with Down syndrome, RDS Runners have participated this year in races across the country:

• Walt Disney World Marathon
• NYC Half Marathon
• Texas Marathon in Dallas
• Glass City Marathon in Toledo
• Fun runs in Montclair, NJ, and Boulder, CO
• San Fracisco Marathon Weekend
• Shorter races in the Midwest.

The RDS Runners team was a top fundraiser in the NYC Half Marathon, Texas Marathon, and San Francisco Marathon.

The program is seeing continued growth in 2013, and we’re excited to keep that momentum going heading into the summer and fall months.

The RDS Runners team is an official charity in numerous upcoming events.

Here is a quick list of races where RDS is still accepting runner registrations for:

• Air Force Marathon – September 21
• Twin Cities Marathon – October 6
• Marine Corps Marathon – October 27
• ING NYC Marathon – November 3

You can view a complete schedule of RDS Runners upcoming races on our website.

We’re still looking for more runners to join our teams and run for Down syndrome research. For more information about RDS Runners and any races we participate in contact us at rdsrunners@researchds.org.

As RDS Runners say:

"Any Race… Any Place… Any Date."

A Night of Art and Blues: RDS Fundraiser in South Bend, IN

Here is an impressive video produced by the event coordinators of A Night of Art and Blues, a fundraiser for Research Down Syndrome being held in South Bend, IN on May 11. Parents and others speak about the remarkable revolution underway in research to understand and treat learning disabilities in Down syndrome. Join the Revolution by donating to the event here.