Leadership Planning Around Coronavirus

Thu, March 12, 2020 12:41 PM | Anonymous member (Administrator)

Update on 4/28/2020 with updates to the "Q & A on COVID-19 and Down syndrome:" please link here for the latest medical guidelines and revisions to the Q and A, in both English and Spanish.

Update on 4/6/2020 with "Q & A on COVID-19 and Down syndrome" now available in Spanish:

Link here for Spanish version of Q & A

Update on 3/27/2020 with "Q&A on COVID-19 and Down Syndrome."

This easy-to-read documents were created jointly by organizers: DSMIG-USA, Global Down Syndrome Foundation, LuMind IDSC, National Down Syndrome Congress, National Down Syndrome Society and the National Task Group on Intellectual Disabilities and Dementia Practices. Supporting organizations included: Down Syndrome Affiliates in Action, Gigi's Playhouse, International Mosaic Down Syndrome Association, Jerome Lejeune Foundation and T21 Research Society.

The earlier versions have been removed as of 5/20/2020.


Update on 3/18 with nonprofit/marketing: resources

Register for  Ok....What Do We Do Now? on Mar 20, 2020 1:00 PM EDT at with educator, behavior analyst and inclusion expert Stacy Taylor HERE.

Please note the recording will only be available for 48 hours.


Update 3/16 of free online resources for nonprofit orgs and the families they serve here:

Tuesday, 3/17 from National Down Syndrome Congress: 

WEBINAR recording from NDSC:

Preparing Yourself, Your Family and Your Home for Online Learning

Join the NDSC for a webinar to assist in adjusting to online learning in the home setting. Sean J. Smith, professor of Special Education at the University of Kansas and NDSC board member, will help you prepare your home environment and help you find balance during this shift to a new normal. This is the first in a series of webinars which will also include instructional supports, technology, and online curriculum tips.

Wednesday, 3/18 from CharityHowTo:

WEBINAR-March 18, 3 PM EST

Coronavirus and What You Need to Know About Postponing and Cancelling Events

Register here.

WEBINAR - March 24, 12 noon EST

FUNctional Fine Motor Fun: At-home activities with your child with Down syndrome

Join DSAIA and occupational therapist Jen Goldman as she presents ideas for children with Down syndome of all ages for practical, at-home activities to maintain and strengthen fine-motor skills.

Register here.


Today, on March 12, 2020, we shared some information and resources on "Leadership Planning Around Coronavirus." If you missed the newsletter issue or want to revisit that information, it is available here.

We will continue to provide updates and resources here as resources and recommendations for our community are developed. 

We invite you to share your communications, messaging and other thoughts for your fellow leaders of local Down syndrome support organization on our facebook page or group here as situations continue to evolve.

As with any communications plans, the PR experts* recommend 5 keys to effective communications:

  1. Practice empathy, transparency and being responsive.
  2. Have an escalation plan.
  3. Prioritize stakeholders.
  4. Depend on experts.
  5. Seek help from professionals.

*These five tips come from Peter Lamotte, Senior Vice President, Chernoff Newman, a marketing and communications firm based in Columbia, South Carolina.

3/12/2020 at 4:30pm EST UPDATE: Global Down Syndrome Foundation released this statement and recommendations related to COVID-19 and defining "high risk" as it relates to patients with Down syndrome.

I want to tell you what WONDERFUL time I had at the conference. I learned so much and came away with lots of ideas for our organization. -Barb Waddle, The Upside of Downs of Northeast Ohio


Down Syndrome Affiliates in Action started as a conference bringing together outstanding leadership from Down syndrome organizations around the country. Learn More

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Down Syndrome Affiliates in Action
PO Box 7192

Missoula, Montana   59802



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