A letter to the Duchenne community

  Posted on January 21, 2026

To the Duchenne Community,

Since 2018, Little Hercules Foundation (LHF) has proudly helped families living with Duchenne muscular dystrophy access the care and treatments they deserve. Today, we’re writing to share some steps we are taking in 2026 to realign and recommit LHF to that essential mission—continuing the work toward our vision of a better quality of life for every individual and family living with Duchenne.

Recentering Our Mission

In recent years, LHF has expanded our work to share what we’ve learned about access challenges in Duchenne with other rare disease advocacy organizations. This resulted in our development of the Rare Access & Coverage Education (RACE) Program, which is designed to train our fellow rare disease advocates to prepare for their first drug approval, navigate coverage denials and constructively engage payers.

It is vital work, and today we are excited to share that this work will continue through EveryLife Foundation for Rare Diseases’ Rare Access program. To support the expansion of the EveryLife Foundation’s access efforts, Amy Aikins is partnering with EveryLife Foundation as a consultant, after a long tenure with LHF. The RACE program will continue to train rare disease advocacy organizations using our curriculum developed by rare disease advocates with 50 years’ experience in Medicare/Medicaid, commercial insurance, social services and insurance regulation. EveryLife has been a terrific partner to LHF, and we are grateful for their support and commitment to the RACE Program.

For LHF, this means a recentering of our mission around advocacy for patients and families living with Duchenne. We will continue to provide 1:1 support for DMD families facing coverage and care obstacles; liaise with drug sponsors and policymakers to ensure access issues remain a top priority; and advocate at the state and national level, whenever possible, to remove systemic barriers that keep our community from accessing the therapies and care they deserve.

Realigning Our Team

To support this renewed mission, we have realigned the LHF team and talents to support our essential work.

• Kelly Maynard, Founder and President, will continue to lead LHF’s strategy and lend her expertise, as needed, on complex access cases and coverage barriers while she transitions to more of an operations role. At the same time, after 13 years at the helm of LHF, Kelly will be stepping back from day-to-day foundation work to be present with her family.
  
  
• Jennifer Handt, a Duchenne mom and advocate, will join LHF as Director of Patient Access. Since Jennifer’s son, Charlie, was diagnosed with DMD in 2020, Jennifer has become a prominent advocate for wide-ranging DMD issues including Duchenne drug approvals, state Medicaid coverage, patient-centered trial design and newborn screening. As an LHF collaborator, she has played a key role in shining public and media attention on coverage denials, helping families win complex appeals and accessing gene therapy coverage. In addition to working 1:1 with families on access issues, Jennifer will leverage her career skills as a strategic communicator and healthcare writer to continue to raise awareness of LHF’s mission and the key advocacy issues impacting the DMD community.

• Jill Castle, Director of Advocacy and Education, will continue to focus on state-based efforts, such as newborn screening, and the patient engagement needed to support this work. Jill will continue our efforts to ensure patient and caregiver experiences are heard and reflected in access decisions. Jill will also be taking on Medicaid policy.
  
  
• Jenn Pierson, Business Manager, will continue to provide critical operations support for LHF.
  
  

We know that change can be hard—and downright scary—especially when families are dealing with the constant unknowns of Duchenne. We want to assure you, our community, that LHF remains more committed than ever to supporting our families through the ups and downs of Duchenne, together. With our growing pipeline of available therapies, we remain ready to help ensure that no family is denied the access to available treatments they deserve. We will continue to lead the way toward a better quality of life for every person and family living with DMD, with resolve, determination and an ever-present hope for a better future as our guide.

Please don’t hesitate to reach out to us if you have any questions: kelly@littleherculesfoundation.org

-The Little Hercules Foundation Team