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

DSGKCBy 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.

One thought on “DS Guild of Greater Kansas City – 360 Support of Cognition Research

  1. Jack

    As a parent and an advocate for DS I am very impressed with the work that people like Amy and may others are doing for our children. Thank you!
    However, I want to share with the DS community some serious concerns that I have after reading through the report on how the $ raised are invested in DS research.
    It is very unsettling for a lay person to realize that for the last 3 years the Lumind foundation has funded the same people, projects and labs!
    Is this the policy of the Foundation?
    Is it because there are no new research proposals submitted to the Foundation? Last time I checked the website gives instructions on how to apply for a grant.
    For me the situation stinks, since it looks like a little club of friends who automatically get the $ with no competition or questions asked (parenthetically 2 SAB members are also recipients of grants for the last 3 years).
    I strongly believe that as for any other field we need new ideas and new people on board to advance our understanding of the syndrome and most importantly to come up with a new viable drug or therapeutic approach for our children.
    It is time to stop the status quo!
    I would like to know the opinion of other parents on this very important topic.

    Jack

    Reply

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