NDSS Conference in Washington, DC

  • NDSS Conference in Washington, DC

    • Apr 5, 2024
    • By: rgdsn_admin
    A letter from Lena Armstrong-Strober, RGDSN Advocacy Committee Chair

    On March 20th and 21st I was fortunate to attend the National Down Syndrome Society (NDSS) Conference in Washington, DC. It was extra special that I had a member/mother from New Mexico join me, Vanessa Asencio.

    On March 20th, we spent the day training and learning about the initiatives that we would present the following day to NM representatives on capitol hill.

    Our focuses were: Charlotte Woodward Organ Transplant Discrimination Prevention Act, NAPA Reauthorization Act, DeOndra Dixon Include Act, SSI Savings Penalty Elimination Act and inviting members to join the Congressional Task Force on Down Syndrome.  

    While all of these initiatives are on a federal level, all 4 representatives that we met were very appreciative to have actual constituents from New Mexico present to meet with them. A couple of them asked what other issues our members here in NM are dealing with that need to be addressed. We were able to speak about a few concerns that have affected our personal families and others that we know about. Personally, I feel very good about the connections and traction that we were able to make in DC.  

    So what's next? There is still much work to be done and things to be accomplished.

    I am appreciative of those members who have reached out with concerns/issues to be addressed.  Please reach out so we on the committee know what the greatest needs are on a local level.  

    What else? We are still recruiting new members for our Advocacy Committee! Please come and join us as there is power in numbers! Email me at advocacy@rgdsn.org.

    Lastly, here are a few photos from DC.



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