US FDA Grants Expanded Approval of ELEVIDYS Gene Therapy for DMD Patients Ages 4 and Above

Innovations in Care

We provide access to support and programs that empower the lives of people living with neuromuscular diseases.

Next Steps Seminars

MDA Next Steps Seminars offer information, resources, and connection during critical life transitions such as receiving a new diagnosis. Delivered virtually, this program aims to empower learners to move forward in their journey with confidence. Learners will be able to participate in small group discussions, hear directly from expert clinicians, and learn from others who are farther along in the journey. Participants also receive companion materials in the mail to support their learning. This program is provided at no cost. Registration is required.

Register Today

Registration is offered on a rolling basis to people living with a neuromuscular disease and their caregiver(s). To allow for small group learning, space is limited. Upcoming dates are listed below. If you cannot make the date listed below or if no date is listed, please continue to register and we will let you know when the next session is scheduled.

Healthcare Professionals: This program is primarily for people living with NMD and their families. Healthcare professionals will be allowed to attend only if there is room available. If you are interested in attending a seminar, please contact mdaengage@mdausa.org.

Seminar Options

Newly Diagnosed Adults: This session is specifically for adults ages 18+ who have been diagnosed with a neuromuscular disease in the last 2-3 years. Caregivers are also invited to attend. Topics will include navigating insurance and public benefits, finding medical care, equipment, research, mental wellness, and more.

Newly Diagnosed Pediatrics: This session is specifically for parents/guardians of children under the age of 18 who have been diagnosed with a neuromuscular disease in the last 2-3 years. Topics will include early intervention and special education services, insurance, public benefits, finding medical care, genetic testing, mental wellness for the child and caregiver, and more.

Newly Diagnosed ALS: This session is specifically for individuals who have been recently diagnosed with ALS, their caregiver(s) and family members. Topics will include medical care, equipment and home modifications, financial planning, mental wellness, and more.

Transition to Adulthood: This session is specifically for youth and young adults between the ages of 14-26 who are living with a neuromuscular disease. Parents/guardians are also encouraged to attend. Topics will include higher education, employment, disability benefits, medical care, independent living, social and mental wellness, and more.

Register Today

Upcoming Dates


Newly Diagnosed: ALS
August 27-28, 2024
5:00-8:00pm Eastern time

Transition to Adulthood
October 15-16 and October 22-23, 2024
5:00-7:00 Eastern time

Newly Diagnosed Pediatrics
December 3-4, 2024
5:00-8:00pm Eastern time

Newly Diagnosed Adults
Date TBA

Questions? Please email resourcecenter@mdausa.org or call 1-833-ASK-MDA1 (1-833-275-6321).

If you are interested in sponsorship opportunities, please reach out to mdapartners@mdausa.org.

 

Thank you to our program supporters:

  • Biogen
  • Edgewise Therapeutics
  • RGA Foundation logo