Interested in Attending “Our DNA Doesn’t Define Us: Strategy Sessions for Ending Genetic Discrimination”

I AM ALS is hosting a one-day event to bring together patients, caregivers, advocates, legislators, clinicians and researchers across various diseases to forge relationships, share best practices and begin identifying genetic non-discrimination policies that will help to create a world without genetic discrimination. Removing genetic discrimination from the landscape not only is the right thing to do, it will allow people to know their gene status without fear and take control of their medical journey. This will lead to more empowered people and contribute to the field through research participation. Without the fear of discrimination, more data will be available to researchers and more people may enter into clinical trials. 

If you are interested in learning more about or attending this conference, please fill out this form. If you are interested in submitting a proposal, please click here.

Possible topics include, but are not limited to:

  • Legislation and advocacy 
  • Insurance policies and healthcare
  • Impact of genetic discrimination among friends, family, romantic partners and work relationships
  • How genetic discrimination impacts research participation
  • Research and anonymizing patient data

When: 6/11/21 from 1 pm ET – 7:00 pm ET

Where: Zoom

Who: I AM ALS and I AM ALS’ Familial ALS Community Team

Cost: Free 

Tentative Schedule:



Shelly Encher, Co-Chair of I AM ALS’ Familial ALS Community Team


Opening Discussion: How has genetic discrimination impacted you or your family?

Facilitated by I AM ALS’ Familial ALS Community Team

For people who have terrible diseases that run in their families the advances in genetics has been a promising time of new research and therapies. But there is a flip side to knowing what causes disease and who is likely to develop disease. People and institutions with this knowledge may treat you differently or discriminate against you. This conversion will center our daylong discussion of genetic discirmination as a lived-experience, not an abstract theoretical debate.


The Need to Expand Genetic Nondiscrimination Laws

Mark Rothstein and Rosie Isasi

U. of Louisville Sch. of Med./U. of Miami School of Med.

The expansion of genetic information has raised concerns about genetic discrimination. The federal Genetic Information Nondiscrimination Act (GINA) prohibits discrimination based on genetic information in health insurance and employment. Laws in 47 states prohibit genetic discrimination in health insurance and 35 states prohibit genetic discrimination in employment. The laws have symbolic value, but they offer limited protection. Effective January 1, 2021, Florida became the first state to prohibit life insurers from using genetic information in underwriting and requiring applicants to sign authorizations giving the companies access to the applicants’ medical records. This presentation will cover the current state  Genetic Nondiscrimination Laws and discuss whether Florida’s new law should serve as a model for other states.

3:15-4 pm

From Canada to California: Examples of Progressive Genetic Nondiscrimination Laws

Kristiana Salmon, National Programs Manager – Genetic ALS at the Nuero in Montreal, and Jean Swidler, Co-chair of I AM ALS’ Familial ALS Community Team

Following Mark Rothstein and Rosie Isasi, this presentation will show how change is possible by reviewing the impact of legislation that expands genetic discrimination protections. The two case studies that will presented are Canada’s Genetic Non-Discrimination Act (GNDA) and California’s Genetic Information Nondiscrimination Act (GINA).

4-4:45 pm

To Know or Not to Know: Experiences with Making Decision to Pursue or Not Genetic Testing 

Facilitated by I AM ALS’ Familial ALS Community Team

What contributes to the decision to pursue predictive testing? Is fear of how society or other people might change how they treat us a factor ? Hear from some community members who have faced that or are facing the decision now, then share your experiences as well.


Racism, Bias, and Inequality within the ALS Landscape: A Conversation with Maceo Carter, person living with ALS and Chelsey Carter, MPH, PhD 

There are significant barriers to ALS diagnosis,care, genetic testing, clinical research and more. Discrimination and the perception of ALS as a”white disease” significantly decreases access to care, tools and resources for Black and Brown people. Join this conversation to discuss these problems and possible solutions.


Ending Genetic Discrimination: Next Steps

Jennifer Gore Dwyer


About I AM ALSI AM ALS is a patient-centric movement revolutionizing how to end disease. We provide critical support and resources to patients, caregivers and loved ones. We empower advocates to raise awareness and lead the movement against ALS in driving the development of cures. Founded in 2019 by husband and wife team Brian Wallach and Sandra Abrevaya, I AM ALS was born out of their desire to rewrite the ALS story for Brian and the tens of thousands of other ALS patients. Learn more at iamals.org.


About I AM ALS’ Familial ALS Community Team:The Familial ALS Community Team’s mission is to raise awareness of familial ALS and empower, support and advocate for potential and actual ALS gene holders and their loved ones. The team’s goals are to: raise awareness of and create advocacy opportunities for those with familial ALS, develop resources on familial ALS and support policy development that addresses gene discrimination. Learn more here


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