2026 Annual Meeting

Being Seen

Sunday, October 18, 2026

1:00 PM – 3:00PM EST on Zoom

Guest Speakers:
Therese Russo, Advocacy Manager at #MEAction
and
Lynn Smith, U.S. Regional Director of Hidden Disabilities Sunflower

How can we make our community’s needs for accommodation more visible? MassME’s 2026 Annual Meeting explored two programs that empower people with ME/CFS, Long COVID, and other IACCIs to own, name, and obtain the accommodations we need.

We heard from two speakers who shared different ways that Being Seen can improve our lives.

Therese Russo, Advocacy Manager at #MEAction, discussed #MEAction’s Frail & Furious campaign, which is organizing people across states to advocate for Medicaid access for people with ME/CFS, Long COVID, and other infection-associated chronic conditions (IACCs). She discussed the “medical frailty” exemption to new Medicaid community engagement requirements, including why it is an important lifeline for people with disabling chronic illnesses who may be subject to these requirements. She shared about #MEAction’s work to date with state Medicaid leaders and community members, and ways you can take part in the campaign. Therese is a disability and chronic illness rights advocate, public health analyst, and community organizer with more than a decade of experience in nonprofit and government administration, including Medicaid policy research.

Lynn Smith, U.S. Regional Director of Hidden Disabilities Sunflower, explained how this program helps people with non-visible disabilities discreetly signal that they may need additional support, patience, understanding, or time—without having to disclose their diagnosis. She highlighted the program’s global reach, including use in more than 90 countries and over 350 airports, and explained how participating organizations train employees to recognize the Sunflower and respond appropriately. Lynn Smith has been involved with the HD Sunflower program for the last three years, creating awareness, managing products and distribution, and helping companies implement throughout their organizations. Lynn is also the CMO for The Sourcing Group, the previous North American partner for the Hidden Disabilities program. She is dedicated to making the Sunflower a national symbol for non-visible disabilities throughout the US.

ADDITIONAL RESOURCES

New Medicaid work and education requirements:

Information from MassHealth, including a screener to learn if you will be affected. (Note that the roll-out and implementation of these new requirements will vary from state to state. Be sure to consult your own state’s Medicaid agency for details.)
#MEAction’s Frail and Furious campaign.

Sunflower:

Information on Hidden Disabilities Sunflower US.
Search for places and organizations that support the program.
Apply for a free lanyard at Boston Logan Airport prior to travel.
Separately, you can purchase a personalized card, including a blank version, or those for ME, Long COVID, Dysautonomia, or POTS.