National Down Syndrome Congress

Fifteen Years of Hard Work Recognized with Exceptional Meritorious Service Award and Standing Ovation at the NDSC Annual Convention in Orlando Florida

Retrieved on: 
Tuesday, July 25, 2023
Denver Health Medical Center, Anschutz Medical Campus, John and Kate Dougherty Farmstead, Eye, NIH, Flower, Cognition, Research, NDSS, Bangladesh Technical Education Board, Government, Down syndrome, Children's Hospital Colorado, Congress, National Down Syndrome Congress, INCLUDE, Education, Pharmaceutical industry

GLOBAL is the leading government advocacy organization for research and medical care specifically for children and adults with Down syndrome.

Key Points: 
  • GLOBAL is the leading government advocacy organization for research and medical care specifically for children and adults with Down syndrome.
  • NDSC executive director, Jordan Kough, and NDSC chair of the board, Kate Dougherty presented the award to Michelle who received a standing ovation.
  • “We are so thrilled to honor Michelle Sie Whitten as our 2023 Exceptional Meritorious Service Award recipient.
  • GLOBAL and NDSC also support each other’s key initiatives such as the GLOBAL Adult Medical Guideline and the NDSC Sibling and Educational toolkits and conferences.

NATIONAL DOWN SYNDROME SOCIETY BRINGS 350 ADVOCATES TO CAPITOL HILL FOR ANNUAL DOWN SYNDROME ADVOCACY CONFERENCE

Retrieved on: 
Thursday, April 13, 2023
Partnership, National Down Syndrome Society, Capitol Hill, Policy, COVID-19, NDSS, Down syndrome, Congress, National Down Syndrome Congress, Down, Conference, Pharmaceutical industry

Washington DC, April 13, 2023 (GLOBE NEWSWIRE) -- The National Down Syndrome Society (NDSS) will host their annual Down Syndrome Advocacy Conference April 17 – 19, 2023 in Washington, D.C.

Key Points: 
  • Washington DC, April 13, 2023 (GLOBE NEWSWIRE) -- The National Down Syndrome Society (NDSS) will host their annual Down Syndrome Advocacy Conference April 17 – 19, 2023 in Washington, D.C.
  • This event will bring over 350 advocates, including over 100 advocates with Down syndrome, from 42 states and the District of Columbia to advocate for legislative priorities that impact the Down syndrome community.
  • The conference is held in partnership with advocacy partners, the National Down Syndrome Congress (NDSC) and the Global Down Syndrome Foundation (GLOBAL) as well as the Down Syndrome Affiliates in Action (DSAIA), GiGi’s Playhouse Down Syndrome Achievement Centers (GiGi’s Playhouse), and LuMind IDSC Foundation (LuMind IDSC).
  • Attendees will advocate for nondiscrimination in the organ transplant system, elimination of subminimum wage, inclusion of the Down syndrome community in Alzheimer’s disease initiatives, and more.

The First Artist with Down Syndrome and Autism to Release An NFT Collection of 1,000 Unique Artworks: Santiago Releases His ABSTRACTO Collection on December 9th

Retrieved on: 
Thursday, December 1, 2022
Ethereum, NFT, Weakness, National Down Syndrome Society, Multimedia, Charcoal, Face, Disability, Down syndrome, Painting, National Down Syndrome Congress, Sale, Non-fungible token, Collection, Autism, Auction

On December 9th, the emerging artist will launch his large-scale NFT collection, ABSTRACTO by Santiago.

Key Points: 
  • On December 9th, the emerging artist will launch his large-scale NFT collection, ABSTRACTO by Santiago.
  • This groundbreaking project will make Santiago the first artist with Down syndrome and autism to release an NFT collection of 1,000 unique artworks.
  • The ABSTRACTO collection champions the Down syndrome and autism communities, and shines light on new opportunities for artists with disabilities.
  • Join Santiago during the ABSTRACTO auction as he unveils the most important art project of his life.

Pediatric Tech Start-Up is Disrupting RSV Season with Hospital-Grade Suction at Home

Retrieved on: 
Monday, October 24, 2022
Child, Urinary tract infection, National Down Syndrome Congress, Pneumonia, Parent, RSV, Nasal congestion, Primary Children's Hospital, Nose, The Doctor Is In, Down syndrome, Bronchiolitis, Edwards A. Park (doctor), NICU, Down, Otorhinolaryngology, Running, Fever, Degenerative disease, Solution, Toy

ATLANTA, Oct. 24, 2022 /PRNewswire/ -- Dr. Noze Best, an emerging tech company focusing on pediatric wellness, is helping families battle RSV with its flagship product, the NozeBot. It's the first portable and rechargeable hospital-grade nasal aspirator developed in the U.S. for children. Designed from the brand's mission to help infants and toddlers breathe better, the NozeBot's innovative features take the stress out of snot.

Key Points: 
  • Designed from the brand's mission to help infants and toddlers breathe better, the NozeBot's innovative features take the stress out of snot.
  • RSV is a highly contagious virus that can lead to respiratory illness in babies, including lung infections like bronchiolitis and pneumonia.
  • While RSV can begin with cold-like symptoms such as coughing, running nose, and fever, parents should know it can become much more severeeven life-threatening.
  • RSV is the leading cause of hospitalizations in infants under age one and results in 57,000 hospitalizations in children under age five.

Global Down Syndrome Foundation, the National Down Syndrome Congress, and the National Down Syndrome Society Highlight the FDA’s Public Warning About Risks Associated with Non-Invasive Prenatal Screening Tests

Retrieved on: 
Wednesday, April 27, 2022
PTP, DNA, American Academy, NIPS, CEO, Blood, Pregnancy, Down syndrome, Parent, National Down Syndrome Congress, Patient, NIPT, Adolescence, FDA, GLOBE, Lists of diseases, National Down Syndrome Society, Prenatal testing, Organization, Device, Food, Fetus, Â, NDSS, Physician, Congress, Pediatrics (journal), Risk, FDA Center for Devices and Radiological Health, Regulation of food and dietary supplements by the U.S. Food and Drug Administration, Dietary supplement, Pharmaceutical industry, Pediatrics

Together, GLOBAL, NDSC, and NDSS publish the Prenatal Testing and Information about Down Syndrome (PTP) , the nations most widely distributed pamphlet about NIPS and Down syndrome.

Key Points: 
  • Together, GLOBAL, NDSC, and NDSS publish the Prenatal Testing and Information about Down Syndrome (PTP) , the nations most widely distributed pamphlet about NIPS and Down syndrome.
  • It is very important that the public understands the limitations of these screening tests, added Jordan Kough, Executive Director of NDSC.
  • The National Down Syndrome Congress is a not-for-profit organization dedicated to an improved world for individuals with Down syndrome.
  • The National Down Syndrome Society is the leading human rights organization for all individuals with Down syndrome.

National Down Syndrome Organizations Launch Joint Effort To Change CMS Proposal Concerning Coverage For New Class Of Alzheimer’s Treatments

Retrieved on: 
Friday, February 4, 2022
People, National Down Syndrome Congress, Risk, Patient, CMS, NDSS, Physician, Intellectual, Down syndrome, Â, ME, NTG, Centers for Medicare & Medicaid Services, Center, Research, Medicare, Medicaid, Disease, Disability in Canada, GLOBE, Comment, FDA, Amyloid, National Down Syndrome Society, Caregiver, Pharmaceutical industry

Last summer, the FDA approved a new drug, aducanumab, one of the first treatments meant to address the cause of Alzheimers disease and the first in a new class of treatments.

Key Points: 
  • Last summer, the FDA approved a new drug, aducanumab, one of the first treatments meant to address the cause of Alzheimers disease and the first in a new class of treatments.
  • CMS is currently making decisions about coverage for this new class of treatments and has proposed coverage only for people in a specific new set of clinical trials.
  • People with intellectual and developmental disabilities, including Down syndrome, cannot be included in those trials, discriminating now and casting doubt on future coverage.
  • This collaboration among national Down syndrome organizations is particularly important given how prevalent Alzheimers disease is in our community, said a spokesperson for the group.

GLOBAL DOWN SYNDROME FOUNDATION ANNOUNCES DAVID TOLLESON AS SENIOR ADVISOR STRATEGIC ALLIANCES

Retrieved on: 
Thursday, December 2, 2021
Patient, Prenatal testing, CEO, Down syndrome, Anschutz Medical Campus, Executive, University, Leadership, Goal, National, Down, National Down Syndrome Congress, Research, GLOBE, Tolleson, Prenatal development, Congress, Growth, Colorado, Pharmaceutical industry

Denver, Dec. 02, 2021 (GLOBE NEWSWIRE) -- Global Down Syndrome Foundation (GLOBAL), welcomes David Tolleson as Senior Advisor Strategic Alliances.

Key Points: 
  • Denver, Dec. 02, 2021 (GLOBE NEWSWIRE) -- Global Down Syndrome Foundation (GLOBAL), welcomes David Tolleson as Senior Advisor Strategic Alliances.
  • David will oversee GLOBALs Membership Programs, the award-winning Down Syndrome WorldTM magazine, and multiple existing and new strategic alliances.
  • We are excited to have David join our executive team, says Michelle Sie Whitten, GLOBAL president & CEO.
  • The Global Down Syndrome Foundation (GLOBAL) is the largest non-profit in the U.S. working to save lives and dramatically improve health outcomes for people with Down syndrome.

AN UPDATED PRENATAL TESTING PAMPHLET ABOUT DOWN SYNDROME FOR PREGNANT WOMEN AND NEW PARENTS

Retrieved on: 
Wednesday, November 24, 2021
Pregnancy, CEO, NDSS, National Down Syndrome Society, PTP, Â, Parent, Down syndrome, GLOBE, OBGYN, Organization, Board, Friends, Prenatal development, National Down Syndrome Congress, Pharmaceutical industry, Management, Tourism

This is the first resource for expectant parents that is supported by all three national Down syndrome advocacy organizations.

Key Points: 
  • This is the first resource for expectant parents that is supported by all three national Down syndrome advocacy organizations.
  • The PTP was created in 2012 by GLOBAL and NDSC and was informed by the first national survey of pregnant women, OBGYNs, OBGYN nurses and genetic counselors.
  • The content includes information about which prenatal tests are definitive and which are not, what parents and families can expect, early milestones, and resources.
  • To learn more about Global Down Syndrome Foundation, visit www.globaldownsyndrome.org
    To learn more about National Down Syndrome Congress, visit www.ndsccenter.org
    To learn more about National Down Syndrome Society, visit www.ndss.org

Global Down Syndrome Foundation, National Down Syndrome Congress, & International Mosaic Down Syndrome Association Expand Collaborations

Retrieved on: 
Thursday, May 7, 2020
Syndromes, Health, Branches of biology, Syndromes affecting the heart, National Down Syndrome Congress, Down syndrome

DENVER and ATLANTA and STOW, Mass., May 7, 2020 /PRNewswire/ -- Today, Global Down Syndrome Foundation (GLOBAL), the National Down Syndrome Congress (NDSC), and the International Mosaic Down Syndrome Association (IMDSA) have announced that they will expand existing collaborations aimed at consolidating and creating Down syndrome resources across the lifespan for families.

Key Points: 
  • DENVER and ATLANTA and STOW, Mass., May 7, 2020 /PRNewswire/ -- Today, Global Down Syndrome Foundation (GLOBAL), the National Down Syndrome Congress (NDSC), and the International Mosaic Down Syndrome Association (IMDSA) have announced that they will expand existing collaborations aimed at consolidating and creating Down syndrome resources across the lifespan for families.
  • The three national organizations will contribute funding, national and international distribution, and coordinated annual staffing associated with the Prenatal Testing & Down Syndrome Information pamphlet, the NDSC Annual Convention Global Down Syndrome Research Roundtable, the IMDSA Research & Retreat conference, and the Global Medical Care Guidelines for Adults with Down Syndrome.
  • "Our organizations have been collaborating for years on these important print and conference resources," says Michelle Sie Whitten, President and CEO of GLOBAL.
  • "To be able to make our existing collaborative resources available for free, in different modalities, and in many different languages, will have a wonderful national and international impact."

Local Family Takes Extra Steps to Raise Awareness About Research For Down Syndrome

Retrieved on: 
Thursday, July 5, 2018
Down syndrome, National Down Syndrome Congress, Syndrome

Angus began pushing Austin in a stroller as he ran to raise awareness about Down syndrome, a tradition that would continue well past Austin learning to walk on his own.

Key Points: 
  • Angus began pushing Austin in a stroller as he ran to raise awareness about Down syndrome, a tradition that would continue well past Austin learning to walk on his own.
  • Last year, the Angus family learned about a number of research projects from LuMind Research Down Syndrome Foundation (LuMind RDS) at the annual National Down Syndrome Congress (NDSC) Convention that could go into clinical trials in his son's lifetime and decided to get involved.
  • "It's nice to know that someone is out there doing this research, because that's how real progress is made," says Angus.
  • Breakthroughs are close, and now is the time for our community to rally for Down syndrome research."