Cognition Goes Global – LuMind RDS Joins Down Syndrome International

LuMind Research Down Syndrome Foundation is proud to announce we’ve joined Down Syndrome International (DSi) as an affiliate member.

DSi is a global network of Down syndrome organizations representing 131 countries around the world. They’re aiming to channel the expertise and experience existing in many countries and use that knowledge to benefit other countries, especially those in the developing world, to better opportunities for people with Down syndrome.

LuMind RDS’s partnership with DSi took off with a burst of speed. In addition to being part of an international network of Down syndrome organizations, LuMind RDS is collaborating with DSi on events such as a meet and greet with Formula 1 legend and Down syndrome advocate Damon Hill in Austin, Texas and promotion of the LuMind RDS Runners program.

“LuMind RDS brings access to information on cognition research in Down syndrome, including breakthroughs related to aging and cognition, which is very important to the worldwide community,” said Andrew Boys, Director of DSi. “DSi was impressed with what LuMind RDS has accomplished and happy to support the research.”

LuMind RDS is proud of pushing the needle on Down syndrome cognition research and supporting the spread of best practices and awareness by joining DSi. Recently DSi has worked on projects providing information, expertise and training in Tajikistan and Oman and this year invited organizations from Albania, Nepal, Bangladesh, Botswana, Vietnam, Uganda, Nigeria, Bhutan and Mauritius to take part in a program at the World Down Syndrome Congress in Chennai, India. Boys said their efforts focus on producing new information resources on medical care, development and education and employment, independent living and participation in society. DSi then looks to build the capacity of national Down syndrome organizations and provide training so that they can successfully advocate for people with Down syndrome in their countries.

“The countries with established programs are critical to building international consensus on some of these issues,” said Boys. “Many other countries are in very desperate situations, with people with Down syndrome facing prejudice and neglect. It’s critical to share knowledge, education and best practices and give fledgling groups in these countries the tools and the confidence to improve the situation.”

Founded in 1993, DSi may have a global reach, but their current footprint echoes the beginnings of Down syndrome. DSi is based in Teddington, England at the former home of pioneering Victorian Physician Dr. John Langdon Down, after whom Down syndrome is named.

Learn more about the great work DSi is doing around the world and look for more events and opportunities for collaboration between DSi and LuMind RDS.

Warmth and Enthusiasm at the Alexander’s Angels Buddy Walk

We were so happy to represent cognition research at the 9th Annual Alexander’s Angels Buddy Walk on October 10, 2015 on Long Island. The sun was shining, kids were laughing, and a good time was had by all in celebration of Down syndrome Awareness Month.

Our VP of Development, Anne Tippett, was on hand to meet people, take photos, and spread the word about Down syndrome cognition research. The warmth and enthusiasm of the crowd and from Esther Gómez-Nieto was contagious and so inspiring!

We have so appreciated the tremendous support from the wonderful families of Alexander’s Angels over the past several years. Please learn more about this amazing organization in this past post on the Plus15 Blog.

DS Guild of Greater Kansas City – 360 Support of Cognition Research

By Veronica Fratta

The Down Syndrome Guild of Kansas City (DSG) has been one of LuMind Research Down Syndrome Foundation’s strongest supporters. Today, we’d like to shine a light on all the good work they are doing.

Amy Allison is the Guild’s director of 13 years. When she arrived, many DSG programs were directed towards infants and young children. She made it her mission to reach out to families with older children and adults with Down syndrome, and today DSG offers a vast array of programs for people from birth to 70. With 1,300 members in 37 counties and two states (Kansas and Missouri), the Guild helps many individuals over a large area.

It became evident early on that DSG also needed to expand outreach efforts beyond serving families to include school districts, service providers, and medical professionals, or DSG would just be “preaching to the choir.” DSG began an extremely successful program to educate and train these other organizations to better interact with and support individuals with Down syndrome. The Guild’s Parents and Schools in Partnership program has been so effective that DSG has consulted with 15 other Down syndrome organizations to help them launch the program.

Another area where DSG has been heavily involved is cognition research. The members of DSG recognized that finding a therapies that could improve memory and cognition would be key to advancing opportunities and quality of life for people with Down syndrome. Since research was beyond the scope of DSG’s abilities, the organization sought out a research entity that had the contacts, the know-how, and the resources to make a real difference…which is where LuMind RDS Foundation comes in!

That journey led to Amy joining our board, becoming an invaluable member for the past three years. She’s dedicated to helping us find treatments to improve the lives of our loved ones with Down syndrome. As Amy says, “Increasing the IQ of a person with Down syndrome by 15-20 points is dramatically life changing. It can mean the difference between living at home and working in a sheltered workshop or being competitively employed while living in the community.”

DSG has reached out to other Down syndrome affiliates to encourage them to also support cognition research. By contributing to the LuMind RDS Foundation, their members will also be benefactors of this important ongoing research.

DSG strongly encourages their members to participate in the DS-Connect registry. As Amy points out, “If we can populate the registry, researchers will be more likely to focus on Down syndrome research and a cohort will be ready when clinical trials come to fruition.” After families contribute health information, researchers can use that information to identify similarities, differences, and trends among people with Down syndrome. This can lead to exciting new developments in cognition and medical research to benefit those living with the condition.

We feel very fortunate to count the Down Syndrome Guild of Kansas City and Amy Allison as LuMind supporters and partners as we jointly work to improve the lives of those who have Down syndrome.

Thank you Amy Allison and the DSG for 360 support of our mission – through generous donations, helping to raise awareness of the need for cognition research and integral resources such as DS-Connect, as well as encouraging other DSAs to join our cause.

Affiliate Profile: Thank You Buddy Walk of South Plainfield

By Veronica Fratta

Michele Both is a busy mom of four beautiful children aged 15, 12, 9, and 6. Yet once a year, she finds the time to organize a walk that mobilizes 650 people to support individuals with Down syndrome.

Michele’s second child, Kyle, was born with Down syndrome. That October, Michele and family attended their first Buddy Walk. As they drove home from the walk, Michele mused about starting a walk closer to home. The very next year, Michele did just that. With help from friends and family, she put on the first Buddy Walk of South Plainfield, New Jersey. About 250 people joined her to show their support.

Now in its 12^th year, the South Plainfield Buddy Walk brings together friends and families of individuals with Down syndrome. Boy and Girl Scouts and youth from various area schools join them to help with the event, which features not just the walk but lunch, games, raffles, and a DJ to pump up the energy.

Michele’s motivation is to raise awareness and promote acceptance of people with Down syndrome as well as raise funds for various Down syndrome organizations because Michele wants to put the money to good use. As a recipient of the Buddy Walk of South Plainfield’s generosity, we at the LuMind Research Down Syndrome Foundation are so grateful for their invaluable contributions to our research efforts!  We share a common mission of improving the lives of individuals with Down syndrome and we appreciate their support.

The next Buddy Walk of South Plainfield takes place on October 3, 2015, at Putnam Park in South Plainfield, New Jersey.  Please go to www.buddywalkofsouthplainfield.com for more information.

Alexander’s Angels: Supporting Every Person in the World with Down Syndrome

By Veronica Fratta

Esther Gómez-Nieto (in red) greeting attendees of a WDSD celebration at the Long Island Aquarium.

We hear so much about how far a mother will go to help her child, but how about a grandmother?  Well, Esther Gómez-Nieto organized a walk, started an art show, educated college students, started a foundation, and raised hundreds of thousands of dollars—all to support her grandson Alexander and others with Down syndrome!

It all started in 2001, when Esther travelled to Arizona for the birth of her grandson. But shortly after her daughter-in-law had Alexander, the doctors determined that he had Down syndrome.  Esther had never had any contact with individuals with Down syndrome, so she immediately set out to learn more.

As she was researching Down syndrome, she came upon the Down Syndrome Research and Treatment Foundation (the LuMind Research Down Syndrome Foundation’s original name).  Esther was able to hear a talk by Dr. William Mobley, currently the Chair of the Department of Neurosciences at UCSD and a LuMind-funded researcher.  In Esther’s own words, she was “blown away by him” and knew that she had to help fund his important work on cognition.

In the years since Alexander’s birth, Esther has been hard at work doing just that.  She started by organizing the first Buddy Walk® on Long Island.  That Buddy Walk® has been so successful that, in 2014, there were 2,000 walkers and they raised over $100,000 to fund local organizations and services, national advocacy organizations, and Down syndrome cognition research.

But the Buddy Walk^® wasn’t enough for Esther!  She realized she needed help and found a community of like-minded individuals.  In 2010, they became a 501(c)(3) organization called “Alexander’s Angels, Inc.”  More than 30 people help Alexander’s Angels, Inc. as board members, officers, and members of various committees.

All those hands come in handy as Alexander’s Angels has gone on to organize an exhibition, DOWNrightART, featuring the artwork of individuals with Down syndrome, and panel presentations on Down syndrome at local colleges and businesses.

These activities have allowed Alexander’s Angels to contribute very generously to the LuMind Foundation’s mission of advancing cognition research for people living with Down syndrome.  When asked why she made the decision early on to emphasize research, Esther Gómez-Nieto says that she realized that when you support research, you’re aren’t just supporting your child, your grandchild, or your local community.  You are supporting every person with Down syndrome in the world, because discoveries made in the lab will impact people with Down syndrome everywhere.

We at LuMind Research Down Syndrome are so grateful for Esther and her wonderful organization, Alexander’s Angels.  Thank you for your generous support of our common mission to fund cognitive research to help people with Down syndrome lead more productive and independent lives.

To learn more about Alexander’s Angels, you can go to their website at http://www.alexandersangels.org.

Alexander may have been shy, but his family enjoyed the day at the aquarium.

Alexander’s Angels families enjoying the sights at the Long Island Aquarium & Exhibition Center.

Here’s a Walk team in front of the shark tank at the Alexander’s Angel WDSD event.

First Lady Mary Pat Christie Lights the Way for Ds Cognition Research

Thank you New Jersey First Lady Mary Pat Christie for championing the “Light the Way” program! Twenty-nine states and territories to date will be participating in Mrs. Christie’s campaign by showing support for Down syndrome cognition research on March 21, 2015, World Down Syndrome Day.

From Governor Christie’s office:

First Lady Mary Pat Christie Spearheads “Light the Way” Initiative with First Spouses from Across the Nation to Bring Greater Awareness of Down Syndrome Cognition Research

Drumthwacket to Illuminate in Blue on March 21st to Recognize World Down Syndrome Day

For Immediate Release                                                                Contact: Kevin Roberts
Friday, March 20, 2015                                                                 609-777-2600

Drumthwacket  “Lights the Way” in blue for World Down Syndrome Day.

Trenton, NJ – First Lady Mary Pat Christie is leading a national effort to bring attention to Down syndrome cognition research, a bio-medical initiative targeted at developing drug therapies aimed at improving memory, learning and communication for individuals with Down syndrome. Mrs. Christie is being joined by 28 other First Spouses from around the country who are participating in this year’s “Light the Way” program to help raise awareness in their home states.

Additionally, Governor Christie has proclaimed March 21 as Down Syndrome Day in New Jersey. Later that evening, Drumthwacket, the Governor’s official residence in Princeton, will be illuminated in blue to symbolize Mrs. Christie’s support of Down syndrome cognitive research.

“I am pleased to have so many First Spouses participate in this year’s Light the Way campaign and I sincerely thank them all for lending their support to an effort that not only expands awareness, but helps to empower adults and children with intellectual and developmental disabilities in New Jersey and across the nation,” said First Lady Mary Pat Christie. “The vital research generated through foundations like Research Down Syndrome (RDS) and LuMind are spurring scientific advancements that are giving these individuals greater opportunities to live independent and fulfilling lives that emphasize community, work and self-reliance.”

To date, First Spouses from Alabama, Alaska, Arizona, Colorado, Florida, Hawaii, Idaho, Illinois, Kansas, Kentucky, Louisiana, Maine, Maryland, Mississippi, Montana, Nevada, New Jersey, New Mexico, North Carolina, North Dakota, Pennsylvania, Ohio, South Carolina, Tennessee, Utah, Washington, West Virginia, Wisconsin and Wyoming are participating in this year’s Light the Way initiative.  In Florida, Governor Rick Scott and First Lady Ann Scott declared March 16-20 Down Syndrome Awareness Week and on March 21,  the Florida Governor’s Mansion will be lit in blue.

March 21 is particularly meaningful to the Light the Way campaign 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 Americans. It occurs in approximately 1 in every 700 births.  Between 2006 and 2010, approximately 1.2 of every 1,000 babies was born with Down syndrome.

The Light the Way campaign will add support to the efforts of non-profit foundations Research Down Syndrome (RDS) and LuMind Foundation to educate and increase awareness and funding for Down syndrome cognition research. Research already funded by the foundations is  making encouraging progress in identifying potential treatments to lessen the impact of Alzheimer’s disease in persons with Down syndrome. Alzheimer’s disease is 3-5 times more likely to occur, at an earlier age of onset, in individuals with Down syndrome.

In the last few years, researchers have made significant progress toward understanding and treating the cognitive issues associated with Down syndrome. This initiative has led to several discoveries and supported the initiation of four clinical trials testing potential drug treatments. These studies now provide the promise of biomedical therapies for improving memory, learning and communication in individuals with Down syndrome, offering the potential for increased life opportunities.

For more information, please visit http://www.researchds.org or http://www.lumindfoundation.org.

 

 

 

DSG Renews Commitment to Ds Cognition Research

We are so happy to announce a $10,000 gift from the Down Syndrome Guild of Greater Kansas City.

“DSG is a longtime supporter of the LuMind Foundation as we know funding Down syndrome cognition research could provide our members a better quality of life and the opportunity to achieve their full potential,” explained Amy Allison, Executive Director of DSG and a LuMind Foundation Board Member. “We are grateful for LuMind’s commitment to driving critical cognition research as we know it will lead to a brighter future.”

DSG is an engaged member of the Ds community, participating in awareness and educational events that stretch well beyond the Kansas City area, including the amazing film “Just Like You.”  We are proud to have such wonderful friends!

Thank you Amy and all the visionary members of DSG!

Affiliate Profile: The DS Association of Central Texas—Something for Everyone

Jack and Suzanne Shepherd

The Down syndrome community of central Texas is blessed with a great support organization. Founded in 1991, the Down Syndrome Association of Central Texas (DSACT) offers a wealth of programs for every stage of life.  We want to recognize DSACT for its generous support of the LuMind Foundation and share what makes them such a special group.

To learn more about DSACT, we spoke to Suzanne Shepherd, the Co-President of the Board of Directors and Healthcare Chair, as well as a busy mom to Jack, who is 17 and happens to have Down syndrome.

Suzanne first became involved with DSACT as a parent after Jake’s birth in 1997. In 2007, she joined the board of DSACT and she has been active in the organization ever since. Suzanne has been instrumental in developing many of DSACT’s programs, from outreach efforts to healthcare professionals to social groups for kids of all ages along with a wide variety of activities and classes. DSACT offers a truly amazing number of programs: book clubs; swimming, dance, and cooking classes; visual and martial arts; etc.

But what we at the LuMind Foundation appreciate beyond anything else is DSACT’s strong commitment to our joint mission of funding Down syndrome cognition research. DSACT has donated very generously to LuMind over the past several years. They have also organized a Research 101 seminar with LuMind’s Dr. Michael Harpold and Carolyn Cronin to educate and inform their members of the progress that has been made in the past decade.

“The research that wasn’t there when my son was born is now there,” says Suzanne, “and that gives me hope!” Hope because, Suzanne points out, “These cognitive treatments will allow people with Down syndrome to make greater strides toward living independent lives.”

Today, we can point to very important discoveries in the area of cognition at well-recognized and prestigious institutions. And, as Suzanne says, it’s more efficient for local organizations to pool their money together to fund research at the national level. In an ideal world, Suzanne would like every affiliate to follow DSACT’s example by contributing 5% of their budget to benefit LuMind and the important cognitive research we fund. We would love that too, Suzanne!

A Down Pour for Downs

Probably everyone would have preferred sunny warm weather, but spirits were the only thing not dampened at the Alexander’s Angels Buddy Walk October 11 on Long Island.

Esther Gomez-Nieto, president of Alexander’s Angels and her board members put together a great day with music, food, and fun. A bit of humor was provided by Kyle (pictured to right with Esther) who quipped it was a “Down pour for Downs!”

The Buddy Walk went on and the rain finally cooperated to leave only cloudy skies as the teams gathered in celebration. With so much fun – the event even made the local news!

Thank you Alexander’s Angels for inviting us to be part of your day and for being long-time committed supporters of cognition research.