mDs Newsletter - January 2022
About the IMDSA newsletter
Happy New Year! My name is Margaret Hamburger. My daughter Katie Kupris and I have volunteered to bring you the IMDSA newsletter 4 times in 2022 - March, June, September, and December. We’re kicking off with a January 2022 newsletter that includes a self-advocacy column, an update from mDs researchers, news from the IMDSA board and more.
Please email me your newsworthy ideas, topics or issues you would like to learn, discover and explore together throughout the calendar year.
Katie and I live in Saint Paul, Minnesota with her dad and my husband John. Katie is a 22-year-old self-advocate with mDs and the kindest person on the planet. No kidding! We look forward to sharing our newsletter journey with you.
Happy New Year! Best wishes for peace and prosperity in 2022.
This column is written by self-advocates born with mosaic Down syndrome. Each newsletter will highlight a different self-advocate’s story. Developing the skills, knowledge, and self-confidence to be able to engage with people effectively, take part in work or social situations, and understand your rights and responsibilities as citizens IS self-advocacy. By learning how to speak up to your family, friends, teachers and co-workers to tell them what is important to you, IS self-advocating. If you are a self-advocate with mDs and would like to share your story, please reach out to: Newsletter@imdsa.org
Meet Katie Kupris
Katie is a self advocate born with mDs living and working and Saint Paul, Minnesota.
Click on my photo to read more about me.
IMDSA recognizes that there is very little information on mosaic Down syndrome. The only way to discover more about this rare form of Down syndrome is through research. IMDSA works with various researchers to discover more about mosaic Down syndrome. If you are a parent or an individual with mosaic Down syndrome, you might consider becoming a part of the Research Connect program.
LEAF Study (Life Experience and Feelings Study)
Little is known about depression and anxiety in individuals with Down syndrome, and even less in individuals with mosaic Down syndrome. Research examining risk factors associated with depression and anxiety in people with the mosaic Down syndrome population is needed to develop better prevention and treatment programs.
Dr. Brown, Dr. Jackson-Cook, and her research team at Virginia Commonwealth University lead a research project, the LEAF Study, focused on stress and depression in people with mosaic Down syndrome. The purpose of this study is to develop better assessments of the emotional health concerns of people with mosaic Down syndrome so that they can obtain a correct diagnosis and appropriate treatment which may otherwise go undetected.
NEW Research Study Needs Volunteers!
Family Strengths and Needs Associated with Caring for a Person with Down Syndrome
Ruth Brown, PhD, is an assistant professor at Virginia Commonwealth University. She is recruiting participants for a research study to better understand family strengths and needs associated with caring for a person with Down Syndrome (DS) during the COVID-19 pandemic. Your participation in a brief survey will help us to learn more about the things that affect how families with a child or adult with DS cope, hope, and adjust.
From the Board of Directors
Executive Director Announcement
The IMDSA Board of Directors has voted to create a paid Executive Director position. This position will be primarily responsible for all the current functions being performed by the volunteers of the organization. This position will also be accountable to the Board of Directors for the operating results and achieving the core mission of the IMDSA.
News, Events, and Resources
Research and Retreat 2022
Who could have predicted that we'd still be dealing with the pandemic in 2022. It's impact on all aspects of life including the rising costs of food has made it difficult for IMDSA to stay within our prepared budget for our Research & Retreat and the Omicron variant that has continued to wreak havoc on the US and the rest of the world. Because of these issues, the board has decided to postpone our next retreat until 2023. We will continue to plan for a 2023 weekend event in the Western part of the US. Until then, stay safe and healthy.
SALT Meeting on March 19, 2022 at 12PM Eastern Standard Time
IMDA’s self-advocates that are 16 years or older meet virtually 6 times per year. Contact Heather Nevulis for more information. Meeting time may change to accommodate including advocates in different timezones.
We accept donations to help us provide support to any individual or family whose life has been touched by mosaic Down syndrome. Membership is offered not only to the people we serve, but to the professionals that partner with IMDSA and help us further our mission.
Please make a donation today. Your support is vital to the work that we do.
Get Involved. There are many ways to show your support for individuals with mDs.
Learn how you can get involved today!