Kendra Riley Takes the Stage at Alliance for Regenerative Medicine’s Meeting on the Mesa

On October 5, Dawning PR Founder Kendra Riley was featured on stage for a Patient Spotlight at the Alliance for Regenerative Medicine’s (ARM) Cell & Gene Meeting on the Mesa at the Arizona Biltmore in Phoenix. She spoke as a rare disease mom and Metachromatic Leukodystrophy (MLD) advocate, sharing her daughters’ journey in a conversation with Bob Smith, venture partner at OrbiMed and chairman of ARM.

The three-day meeting, held October 5 to 7, draws more than 1,500 attendees from across the globe who attend a variety of programming relating to the manufacturing, financing, regulation and reimbursement of cell and gene therapies. The Patient Spotlight gave the room a chance to hear directly from a family these therapies are meant to serve.

In her session, Kendra shared how her family moved to Italy for six months during the pandemic so one of her daughters could receive gene therapy, and how a press release put together by her team and colleagues in the industry helped them raise the money to get there in one month’s time; the deadline in order for her daughter to receive this potentially life-saving therapy.

She walked through the advocacy that followed, including Right to Try 2.0 legislation for individualized treatments, that was inspired by the Riley family and a reform of the original legislation written by the Goldwater Institute and Senator Nancy Barto and has passed in 15+ states, which was followed by the addition of MLD to the national newborn screening panel by Secretary Robert F. Kennedy Jr. Her work has also helped multiple children across the country access the same treatment and inspired additional research in the newborn screening space.

Looking at the timeline, she said progress has come faster than usual: “from 2020 to 2026, we now have an FDA approval, newborn screening for MLD, and this Right to Try 2.0 legislation.” Noting that progress doesn’t normally move at this speed.

Kendra also noted that she documents her family’s experience at rileysroad.com; a blog she started during her daughters’ treatment in Italy, when another family’s blog was the only resource she had to lean on, so that future families would have more than one place to turn.

Watch the full session below.

To invite Kendra to speak, or to talk with Dawning about PR for your organization, contact us at info@dawningpr.com.