Advisory committee that offers recommendations to DDSD on Policy

 

My name is Chris Futey. I am a parent of a child with Down Syndrome and an employee of the Developmental Disability Supports Division (DDSD). I am also involved with an advisory committee that offers recommendations to DDSD on Policy. I am reaching out to see if there are any self advocates, parents, or RGDSN reps that would like to attend our meetings. 

 

The 2018 meeting schedule for the ACQ meetings are below - contact Kathy for times.

April 12, 2018: Albuquerque,  Nusenda Federal Credit Union

June 14, 2018:  Albuquerque, Nusenda Federal Credit Union

August 9, 2018:  Albuquerque, Nusenda Federal Credit Union

October 11, 2018:  Albuquerque, TBD

December 13, 2018:  Albuquerque, TBD

 

 

Bureau of System Improvements
Developmental Disabilities Supports Division

5301 Central Ave NE, Suite 900
Albuquerque, NM  87108
ph:(505) 841-5524

Kathy.Baker@state.nm.us

Global's Response to Netflix's Vile Netflix Show "Disgraceful"

Dear Global Members,

 

As you may have seen the vile comments made by comedian Tom Segura in his Netflix show "Disgraceful" about the R-Word and Down syndrome, I wanted to take a moment to share with you Global’s response to Netflix’s anti-disability, anti-Down syndrome, anti-disability rhetoric.

 

Below is the response Global put up on our website and social media with the following statement. Also, please find the attached graphic we utilized in our posts. We encourage you to share this on your social media as well and link to our blog post on for any future newsletter posts you may have planned. Please let us know if there is any additional resources that may be helpful.

 

Global’s Response

  1. https://www.globaldownsyndrome.org/president-ceo-michelle-sie-whitten-responds-to-netflix-comedian-mocking-individuals-with-disabilities/
  2. https://www.facebook.com/GDSFoundation/

 

Thank you,

Martha Cronen Keele

 

GLOBAL CALLS OUT NETFLIX FOR ANTI-DISABILITY, ANTI-DOWN SYNDROME RHETORIC

With the #Metoo movement in full swing and the 1st Anniversary of the Women’s March looming, it’s shocking to see Netflix promoting its newest stand-up show aptly called “Disgraceful.”   Netflix promotes the show by claiming its comedian “…gives voice to the sordid thoughts you'd never say out loud, with blunt musings on porn, parking lot power struggles, parenthood and more.”

 

Apparently sordid thoughts about the disabled and people with Down syndrome are fair game. In fact, the show’s anti-disability sketch was deemed so funny by Netflix that it is used in their trailer. 

 

At the Global Down Syndrome Foundation we are grateful for the freedoms we have in the US – including freedom of speech.  AND YET, we also believe there are words that we are free to use, but as a society choose not to use because they are so directly tied to violence against a vulnerable population.  I would argue the ‘R’ word is exactly such a word – witness Willowbrook, NY to Pueblo, CO today.  The best essay I have read on this subject is written by our board member and renowned actor, John. C. McGinley (after you read it you will have a “Captain My Captain” moment). 

 

Sometimes it is hard to advocate.  I’m a working mom, I’m perpetually tired so I get it. But we can all take a moment to post, like, share, or petition.  And WHY NOT demand Netflix to:

o   Edit out the anti-disability and anti-Down syndrome rhetoric in the show?  

o   Immediately take the appalling sketch out of their trailer?

o   Issue an apology for momentarily failing to use humanity as the demarcation line for comedic depravity?

 

What we are asking for is NOT too much or too difficult.  There are lots of depraved topics that are funny (disclosure – I’m half NJ Italian) that don’t lend themselves to violence or oppression.  So, you can still get that cheap laugh and feel good about yourself. 

 

It’s time to call folks out. Seriously, we have nothing to lose. 

 

Michelle Sie Whitten, President and CEO, Global Down Syndrome Foundation

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NDSC Scholarship Application Open for 2018

2018 Scholarship Application

National Down Syndrome Conference

July 12-15, 2018

Sheraton Dallas Hotel, Dallas, TX

http://www.ndsccenter.org/the-convention/

 

The Rio Grande Down Syndrome Network will be offering scholarships to the 2018 National Down Syndrome Congress Annual National Conference July 12-15 in Dallas,TX.  Previous scholarship recipients from 2017, 2016 and/or 2015 are excluded.  5 scholarships will be awarded.  If more than 5 families submit a scholarship request, a random drawing will take place to award scholarships.  Only RGDSN members are able to submit a scholarship request.

The purpose of the scholarship is to allow the scholarship recipients to have an opportunity to experience the latest information from experts in the Down syndrome field.  Therefore, scholarship recipients are expected to share their experiences with RGDSN.  When scholarship recipients return from the convention, a survey will need to be completed.  

Scholarship application must be completed and submitted online by March 3,2018.  Scholarship recipients will be notified by March 18, 2018.    

Scholarship May Include some or all of the following based on applicante pool:

  • Travel expenses for individual with Down syndrome and one caregiver/parent up to $1000 for both.  
  • Provide 1 hotel room for 3 nights in Dallas for up to $600.
  • If individual with Down syndrome and caregiver fly, provide transportation to and from hotel and airport for up to $80.
  • Provide family registration for family and up to $200 in other conference services (i.e. kids camp, etc)

All other scholarship recipient expenses related to the conference will not be covered by RGDSN (i.e. meal expenses, additional guests in hotel room, etc.).

Scholarship Critera:

  • Attend with Individual with Down Syndrome (Note: if special circumstances, board will consider)
  • Member of RGDSN (click here if not a member to sign up)
  • Live in New Mexico
  • Have not received RGDSN scholarship in 2017, 2016 or 2015

Scholarship recipients will be responsible for directly purchasing all scholarship items noted above and submit receipts for reimbursement to RGDSN in a timely manner.  Registration and hotel rooms will open early April and need to be secured by scholarship recipient the day it is open.   If you would like a hard copy application, please email info@rgdsn.org or call/text 505-382-5061.  The RGDSN Board will consider special circumstances that don't meet the criteria noted above.  Please note the circumstance you would like considered below.

 

 

CLICK HERE TO COMPLETE SCHOLARSHIP APPLICATION

Leading scientific journal, American Scientist Magazine, publishes groundbreaking study by Crnic Institute, redefines Down syndrome as immune system disorder

A groundbreaking new study conducted by the Crnic Institute for Down Syndrome shows definitively that Down syndrome can be categorized as an immune system disorder, based on analyses of thousands of proteins found in blood samples.

The renowned American Scientist Magazine is publishing the results in their January-February edition.

The study by the Crnic Institute for Down Syndrome at the University of Colorado School of Medicine on the Anschutz Medical Campus was also recently published in Nature’s sister journal, Scientific Reports, and was underwritten by the Global Down Syndrome Foundation.

Led by renowned scientists Dr. Tom Blumenthal, director emeritus, and Dr. Joaquín Espinosa, executive director of the Crnic Institute, the research team looked at 4,000 proteins in the blood samples from hundreds of individuals with and without Down syndrome, the largest project of its kind.

The study builds upon earlier research published by the Crnic Institute showing that the interferon response is consistently activated in cells obtained from individuals with Down syndrome. This contrasts with the interferon response being activated only when fighting infection or a virus in the general population.

The findings provide an important clue as to why nearly 100 percent of people with Down syndrome get Alzheimer’s disease, why they are susceptible to autoimmune disorders like type 1 diabetes, and why they are protected from solid tumors such as breast and prostate cancer.

Read the full article here: www.americanscientist.org/article/down-syndrome-the-immune-system-disorder