DYRK1A Syndrome US

DYRK1A Syndrome US is a nonprofit 501c3, a tax-exempt organization with the main purpose of improving the quality of life for those affected by DYRK1A Syndrome. Through support, education, research, and collaboration we are working to improve family life, daily living, and clinical care for those with DYRK1A Syndrome. The objectives identified in our strategic plan for the years 2021 to 2024 are to; build organizational capacity, provide support and education to the DYRK1A patient and caregiver community, provide education and outreach to the DYRK1A clinical and scientific communities, push the envelope in research, patient care and therapies in ways that significantly improve the quality of life for DYRK1A patients.

The organization's accomplishments are all made by volunteers, people who give their time and experience to the mission. The Board of Directors meets quarterly, three times virtually and once in person. We have two main committees that meet monthly, internal affairs & external affairs. The Internal Affairs Committee handles all the internal and operational areas of the organization which includes; governance, finances, and volunteers. The External Affairs Committee handles areas of the organization that are external, such as; family support programs, meetup conferences, fundraising, communications, public relations, and marketing.

We are also in charge of maintaining a unified international community of families and professionals focused on improving the lives of individuals affected by DYRK1A Syndrome through the DYRK1A Syndrome International Association.

Governance - Board of Directors

2023 Annual Report

2022 990

2022 Annual Report

2021 990

We had a very generous donation that came to us on the very last day of the year in 2021. This was very exciting for our community since it was at the end of the year we carried over a large number of funds for the following year.

Years 2019 & 2020

In 2019 DYRK1A Syndrome US became a tax-exempt 501c3. In our first 2 years, we averaged under $50,000 thoses years. We remained under the annual threshold that would require us to file a full Form 990. We filed a 990-N which is an electronic notice stating we were under $50,000. In our first 2 years of being incorporated, 95% of our expenditures were on programs for our family community.

Our tax identification number is 83-3342162. Donations can be mailed with checks made out to DYRK1A Syndrome US at 1745 Lorna Ln, Otsego, MI 49078. Online donations can be made through PayPal Giving Fund where 100% of your donation goes to our mission.