The scope of the services provided by the IMDSA has dramatically increased over the past decade.
The following is just a partial list of the activities IMDSA offers and participates in:
· A regular Research & Retreat event that allows families to meet each other and key researchers
· Increased cooperation and involvement in research studies benefitting the mosaic and general Down Syndrome communities
· A Self Advocate support group with regular meetings that allows adults with mosaic Down syndrome to meet virtually and share and learn from one another
· Dedicated support groups over various means of social media
· Participation in various national and regional Down syndrome conferences
· Partnering and meeting with other Down Syndrome organizations and research groups to advocate for mosaic Down syndrome to be included as a form of Down syndrome in their publications and studies
· Oversight of an increased social media presence which has grown from a single Yahoo group to a multi-faceted Website, Public and Private Facebook group, Instagram site.
· Many Facebook “subgroups” to provide support for the many facets of the mosaic Down Syndrome population including birth groups, and regional groups, among others.
All of this work is being done by a small group of dedicated volunteers!
As we approach the end of 2021 and look to the future, the IMDSA is at a crossroads.
This level of activity is not sustainable from the current all-volunteer group of individuals, each with other full-time commitments such as family, school, and career. Also, recruitment and retention of new volunteers has been difficult. The Pandemic has only diminished this pool of potential new volunteers to assume all or some of these responsibilities. Lastly, it takes time to gain the knowledge and understanding needed to be able to contribute to the organization.
To allow the IMDSA to continue to meet its mission of providing support, information, and research to any family, individual or professional whose life has been affected by mosaic Down syndrome. a more dedicated resource is required.
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.
Given Brandy Hellard’s longstanding involvement and leadership in the IMDSA, the Board agreed that she would be the ideal choice for this new position. On November 11, 2021, the Board of Directors and members at large, unanimously voted to create an Executive Director role and for Brandy Hellard to fill this role.
This change created a vacancy at the Board President position. On November 11, 2021, the Board of Directors, and members at large, voted unanimously in agreement for Kristina Welch to assume the role of Board President.
These changes will go into effect on January 3, 2022. We believe these changes will place the IMDSA in the best position to continue its mission, sustain its activities and expand its reach. More details to follow in the coming months on this new and exciting chapter in our organization’s story!