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DownSyndrome Achieves (A New Era in Advocacy, Part II)

Posted Feb 25 2011 12:00am

If you love someone with Down syndrome, you owe it to yourself--and to all individuals with Ds--to be educated on the history and current state of Down syndrome advocacy. (Read my previous post  here  for more information on this.)

For the past four decades, our national advocacy organizations have worked to raise awareness about Down syndrome and improve life for individuals with the diagnosis.  And while there have been notable gains in the areas of inclusion in schools, early intervention services, and health screenings for people with Ds--competent research has not been an equal priority, and scientific understanding of Down syndrome has been significantly lagging.

We certainly know more today than ever about the types of things to which our loved ones with Ds may be susceptible (thyroid disease, AAI, leukemia, among others) and health screenings have continued to improve.  But we don't know why these things are part of the unique genetic make-up of a person with Ds.
I am a concerned parent and passionate advocate for my girls with Ds.  Yet, I am embarrassed to say that until last year, I had no idea that there was so little understood about Down syndrome from a scientific perspective.  I just assumed that "someone" was doing research for our benefit, and that we were "at the table" when federal funding was handed out.
Down syndrome as a research area has been represented in government settings by our national advocacy groups, but what we have been receiving in federal funding is no where near enough to fund the type of basic, cognitive, therapeutic, behavioral research necessary for us to gain a fuller understanding of the condition. (It seems we have been out-resourced or out-gunned.)
And this profound lack of funding has slowed the progress of researchers and institutions with the real ability and talent to make scientific breakthroughs in Down syndrome research. 
But there also seems to have been a philosophy of complacency--that what we have is "good enough"--and that understanding more about Ds from a scientific perspective isn't vitally important.
Are you all aware that there is no national patient registry or biobank for Down syndrome? How can we expect to have significant scientific discoveries or understanding about Ds when researchers don't have the money or other resources (data points, samples) to do the important work vital to understanding the distinct aspects and challenges of the condition?
Research is important to me, and not because I am interested in finding a "cure" for Down syndrome, or because I hope a medicine will be discovered to improve cognition in people with Ds.  I am not interested in either of those things.  I do know that parents of children with Down syndrome are all over the board ideologically--and we are failing our kids, partially because of those divides.  
We are going to need to combine our talents, energy and money to be able to ensure that our children and loved ones are as "healthy" as possible, and live in a world as welcoming to them as possible. 
This is the common thread which binds Ds advocates:  our desire to make life better for the people we love with Down syndrome.
I want my girls to be included and valued.  I want them to be physically healthy, and to be able to communicate their unique ideas to others.  I want them to have meaningful relationships; to be able to participate fully in life within our family and our community; to live long and well.
We need to understand why things like heart defects, thyroid disease, higher rates of leukemia, immune suppression, speech issues, early cognitive decline and Alzheimer's are all conditions to which our loved ones are predisposed.  I am hopeful that we can prevent some of these things, or that we can find therapeutic resolutions for them if we have greater knowledge of Ds from a scientific perspective.
We can no longer take for granted that Ds research is being conducted on a grand scale for the benefit of our families, or that our interests are being well-represented in our state legislatures or in Washington.  For decades, Down syndrome has failed to keep pace with other research priorities, pushing our hopes for a more meaningful quality (and quantity) of life and health for our loved ones with Ds even farther away.  
This is not about any one other special interest group (many people have trouble with the comparison to Cystic Fibrosis, in particular).  It is about how many other groups have made significant process, while we are not.  There are 170 different research priorities funded ahead of Down syndrome at the National Institutes of Health, even through Ds has a larger impacted population and incidence rate.
The human genome has already been mapped, yet we don't know as much about Down syndrome as we can, or should, know.
As advocates, we certainly have the passion and the desire to change this, but what we don't have is a coordination of our efforts.  That is not a reason history will accept for our lack of forward progress. It is not a reason we should accept, either.  
We are in the midst of grassroots efforts to fuel a resurgence of the Down syndrome movement.  Parents and advocates, we need our voices to be loud and unified. The time is NOW to run with this, to help propel the movement forward with the common purpose of opening up the world for our children and loved ones in all ways.  We need to work together in order to see the change we envision and desire.  
There is no acceptable reason to sit idle, or to accept the status quo when it comes to Down syndrome research and advocacy.  Our children and loved ones are worth more.  
And this is why I am trying to get the word out about an organization with a mission and plan I not only agree with, but also trust.   DownSyndrome Achieves (DSA)  began and grew out of a local advocacy group (The Central Ohio Down Syndrome Society) to become a significant force in the national Ds landscape.  DSA is the first organization of its kind in the world, and is taking a proactive and progressive approach toward research, scientific discovery and legislative advocacy for Down syndrome.  
I have been a part of this group since its inception and have seen firsthand in Lito Ramirez (founder and CEO of DownSyndrome Achieves) the passion, vision and capability that is being brought to the cause on behalf of us all.
In the 20 months since it was founded, DownSyndrome Achieves has made impressive headway.  DSA is credited with forming  the nation's first Down syndrome research consortium  (The Down Syndrome Research Initiative--DSRI), comprised of nine of the most prestigious hospitals and research institutions in the Midwest region.  (DSA does plan to expand the Down Syndrome Research Initiative into a national research consortium, which would share data and samples in a coordinated Ds research effort.)
There are other research-oriented groups which have emerged and are doing solid work (and DSA is working with many of them). 
But no other advocacy group has built an internal infrastructure which directly contributes to competent research.  With the DSRI, DownSyndrome Achieves is taking a leadership position not only in funding high level research, but also in partnering with world class researchers who will provide tomorrow's scientific discoveries to benefit families like ours.
DownSyndrome Achieves is also unique because Lito and his legislative lobbying team have positioned DSA to be a vital force in both state and federal government, and hold long standing relationships with key members of Congress who will help shape federal funding of Down syndrome research.
We can't sit idle anymore.  We can do more for our kids and all people with Down syndrome.  They are more than worth it.
I would love to see what DownSyndrome Achieves can do with the input of our best voices and advocates. 
This is an exciting time.  We are all part of helping to ensure that the world is wide open for our children and loved ones with Down syndrome.  
Please help spread the word.  Talk to your friends, families and other advocates and share with your local Down syndrome groups.  Share this post or one of the other blog posts below (or share a personal message, along with the  link to the DSA website ) on your blog, on facebook or on Twitter.  
Ignite the fire.  Join us as we write a new chapter in the history of the Down syndrome movement.
* * *

*Please visit  DownSyndrome Achieves to sign up for the mailing list and to learn more.
**If you have questions about DownSyndrome Achieves, leave a comment below and I will try to address them in a separate post. 
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