Lumind: Paving the way for Critical Research to Brighten the Futures of those with Down Syndrome

In honor of World Down Syndrome Day, which is on 3/21 for 3 copies of the 21st chromosome, we are planning a charity walk in our neighborhood on 3/26 to raise money for Lumind, a non-profit that conducts crucial research on Down Syndrome.  There really are so many wonderful non-profits supporting Down syndrome that it is difficult to choose just one worthy of our hard earned dollars, but the research that Lumind is working on really is very exciting. And they need private funding to continue this important research and trials.

So what kind of research do they do?  Lumind currently has a number of clinical trials that they are partnering with the National Institute of Health and some pharmaceuticals that have the opportunity to radically change the futures of those with Down Syndrome including improving cognitive and behavioral deficits, improving memory, and researching Down Syndrome and Alzheimer’s.  (Click here to learn more on their research and trials.)

What could all this possibly mean?  Well, imagine if they could help address behavior, memory and cognitive issues that many with Down Syndrome exhibit. That could possibly mean that children who previously were not good candidates for inclusion in the classroom due to behavioral or cognitive issues (some may have problems with transitions or cannot keep up with an even modified curriculum in class) could now participate in the general education classroom.  Or adults can become more independent and be more gainfully employed.

Think of the resulting domino affect this could have. Being included in the general classroom gives children with Down syndrome better role models to learn from, it can improve self-confidence, and it can lead to more opportunities for inclusion not just in school, but throughout the community.  There can be more high school graduates (not just a certification but be on the diploma track), opportunities for college, more career and job choices, and more acceptance in society and greater independence overall.

This could all positively impact how individuals with Down syndrome are viewed in public and change general perceptions in our society, breaking down huge barriers and negative stereotypes. We would see more true inclusion in the classrooms and in the community. Perhaps it could even lead to the heartbreaking number of terminated pregnancies of those with a prenatal diagnosis of Down syndrome.

We could also possibly help prevent or put off the onset, or lessen the severity of Alzheimer’s in adults with Down syndrome, as they are more likely to develop Alzheimer’s due to proteins linked to Alzheimer’s being on the 21st chromosome.  So those with Down syndrome will develop Alzheimer’s sooner as 1 in 4 who have Down syndrome will develop Alzheimer’s by the age of 40 and half will by the age of 50. These are heartbreaking statistics that Lumind is trying to change.

In many cases, elderly parents are left to take care of their child with Down syndrome with Alzheimer’s or siblings end up taking care of both a parent(s) and a sibling both suffering from Alzheimer’s or dementia, especially as government funded programs and services are being cut. In August 2014, an elderly man in his 80s who had a wife in ailing health and 2 children who were in homes for a severe intellectual disability (click here to read the story). He was concerned that his son was being physically harmed by his housemate, so he felt desperate about who would be taking care of his children when he and his wife would pass, especially as many programs for the disabled in his state (the state we live in) were being cut. Sadly, he decided the best course of action was to take the lives of his wife, his children and himself because he didn’t trust them in the hands of the state when they died.  His action speaks volumes of how the disabled are treated and prioritized in our state, as this horrible act of murder was executed in the name of love.  I would hate for anyone to think of being in such a position, so the more we can do to prevent situations like these by decreasing the cases and severity of Alzheimer’s and dementia (as well as fund programs and services for the disabled), the better off we will be.

As a parent of a child with Down syndrome, I am grateful for the work that Lumind is doing. I am really hoping that our son will benefit, as I too also worry about his welfare when we grow old due to lack of family supports especially on my side. I too am worried about programs in our state being cut and the lack of support for the disabled. And what that would mean for our son should we pass on before him. If Lumind could help prevent, put off or lessen the severity of Alzheimer’s, then that would alleviate some of this concern.

I also hope and dream for Luke to be included in the general ed classroom as well as in the community. I dream for him to graduate high school with a diploma, attend college, find the love of his life and get married. And I pray that he will have a healthy and happy long life that doesn’t include suffering from Alzheimer’s or dementia, especially at such a young age.

If you too have these dreams for your child or loved one or believe in what Lumind is doing or just want to support people with Down syndrome, then please consider donating to their cause. And for any donation made 3/19-3/21, a generous supporter is matching every dollar with $2, so every donation is tripled.  Click here if you would like to donate.


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