A NEW YEAR What does that mean? New perspectives? New resolutions? New wishes? We all celebrated and cheered! As I ponder about it, I am grateful for all of the gifts, the ones we can use and the intangible ones that we neglect to acknowledge at times. Those are the gifts that keep giving. So today as we start the new year, I have been thinking about the Bipartisan Congressional Down Syndrome Caucus …. (read full article here)
Read MoreSeason Greetings: Gratitude and Gifts: As we are getting close to the end of the 2023 year, we pause and reflect on gratitude and all the gifts that we give and receive starting with Thanksgiving and with the Holiday Season. I am thankful for a life worth living.
https://www.dsanv.org/wp-content/uploads/2023/12/DavidEganAdvocacyDecember2023.pdf
Read MoreOp-Ed: Individuals with Down syndrome are citizens who matter in the workforce
As states nationwide begin to eliminate subminimum wage and the U.S. Department of Labor (DOL) has announced its review of Section 14(c) of the Fair Labor Standards Act, I urge businesses to continue hiring individuals with disabilities at a competitive wage.
This outdated law was enacted in the 1930s, allowing businesses to receive a certificate to have the ability to pay individuals with disabilities less than the federal minimum wage of $7.25 an hour, the elimination of this specific section would allow individuals with disabilities to earn the federal minimum wage. While this was originally created to incentivize businesses to hire individuals with disabilities, it has left us earning wages that aren’t livable.
https://www.thecentersquare.com/opinion/article_063a84ae-78bf-11ee-8ece-a332d54dd29a.html
Read MoreDown Syndrome does not define who I am as a person : October is Down syndrome Awareness Month! What does Down Syndrome mean? The syndrome was discovered by John Langdon Down, a British physician who described the condition for the first time in 1866. The syndrome is also known as trisomy 21, because individuals with Down syndrome have an extra chromosome, a third copy of chromosome 21. That extra chromosome is the one key trait that makes us a group. However, all individuals with Down syndrome are not alike. Each one of us is one of a kind while sharing in the same humanity and condition with many others with intellectual challenges or not. Each one of us is a member of a unique family with all of the hereditary traits of many generations.
https://www.dsanv.org/wp-content/uploads/2023/10/DavidEganAdvocacyOctober2023.pdf
Read MoreBirthdays and Aging: Individuals with Down syndrome love to celebrate their birthday. We believe our lives matter and we enjoy a fun party. My birthday is on September 17th and I love to celebrate it every year. On my 40th six years ago, I had a big party and I danced, surrounded by friends and family. This year, at 46, I hope to dance again and celebrate in good health after more than a year of Long Covid, pneumonia, surgery and a hospital stay.
https://www.dsanv.org/wp-content/uploads/2023/09/DavidEganAdvocacySeptember2023-1.pdf
Read MoreDuring the NDSC Conference in Orlando this past July, I was not able to give my report to the NIH DS Consortium because I was in the hospital with pneumonia. My mom sent my prepared remarks to Melissa A. Parisi, M.D., Ph.D., the Chief of the Intellectual & Developmental Disabilities Branch, the DS-Connect, Registry Coordinator at the NICHD. Dr. Parisi read them to the group and I am sharing them with you. You can learn more about the DS. Consortium at https:// downsyndrome.nih.gov/about#members . Various organizations beyond DS belong to the Consortium and each presents their update with the group at this bi-annual meeting. Michael Levitz and I represent individuals with Down Syndrome.
Read MoreInclusive Integrated employment: I am proud to have worked for 25 years in a fully competitive integrated employment position starting in 1998 when as a high school senior, I had an internship through the Marriotts Bridges program as a clerk in the Distribution Center at Booz Allen Hamilton in McLean, VA. That internship turned into a staff employment that gave me opportunities to grow as an adult contributing and being treated as other employees in the company, earning equal pay and full benefits like everyone else. It started my career.
https://www.dsanv.org/wp-content/uploads/2023/07/DavidEganAdvocacyJuly2023.pdf
Read MoreInclusive Early Childhood
My parents have told me many stories about the early days of my childhood. They have six albums of me from the first two years of my life. Mom had a playgroup that met once or twice a week at our apartment. One of the children there was born on the same day as I was and in the same hospital, and his dad was a colleague of my mom’s. The others were children of graduate students who lived close by.
Read MoreThe focus of this blog is an interview with Charlotte Woodward, a friend of mine and a shining advocate. She is an individual with Down syndrome who shows us all the myth of limitations. She had a challenging beginning and an on going path of amazing accomplishments.
Read MoreOn April 17-19, the National Down Syndrome society is holding an Advocacy conference in partnership with other national Down syndrome organizations, including NDSS Advocacy Partners, the National Down Syndrome Congress, and the Global Down Syndrome Foundation. It is important that we will together advocate for legislative priorities that impact the Down syndrome community.
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