Giving Good Days Newsletter – Summer 2025

A Message from Our President

Dear Friends,

The first half of this year has reminded us how vital and fragile access to care can be for so many. Due to a recent lack of funding, we are currently unable to provide grants through our Macular and Retinal Disease programs. We know how devastating this news is for individuals who rely on our support to afford these treatments. Please know we are working tirelessly to secure new funding so we can once again serve everyone who turns to us for help. 

At Good Days, we believe that no one should go without the care they need due to cost. Our team is actively engaging with partners, donors, and industry leaders to restore this program. 

Even in the face of challenges, we remain steadfast in our mission to advocate for better care and access. We’re proud to once again lead the national Chronic Disease Day campaign on July 10. This initiative brings attention to the burden of chronic illness and mobilizes support to prevent disease and expand access to quality care.

We’re also excited to share that Good Days has recently joined the Patient Advisory Councils of both the Institute for Gene Therapies and the Alliance for Regenerative Medicine. These leadership roles allow us to advocate for patient-centered care and help ensure new therapies are accessible to the people who need them most.

Thank you for standing with us. Together, we can overcome today’s challenges and build a stronger, more compassionate healthcare system for tomorrow.

With gratitude,

Clorinda Walley

President, Good Days

Helping Hadlee Thrive

When Stephenee and William received a call from their state health department just weeks after their daughter Hadlee was born, everything changed.

“You need to be in Salt Lake City by 8 a.m. tomorrow,” they were told. At just three weeks old, Hadlee had been flagged through newborn screening for Spinal Muscular Atrophy (SMA), a rare and life-threatening genetic disorder that can severely affect muscle strength and movement.

“We had never even heard of SMA,” Stephenee recalls. “It was the scariest moment of our lives.”

Diagnosed as asymptomatic, Hadlee’s exact type of SMA wasn’t clear at first. The uncertainty and waiting for answers felt endless. Once they were connected to a neurologist and a patient advocate, they learned about Good Days and the help available to offset the high costs of treatment.

Hadlee was prescribed a one-time gene therapy with a $2.3 million price tag. While insurance and the drugmaker’s support program covered the treatment itself, there were still major out-of-pocket costs. Good Days stepped in to help with travel, hotel stays, and Hadlee’s monthly insurance premiums—relieving an immense financial burden during one of the most emotional times in their lives.

“The assistance has meant the world to us,” Stephenee says. “They help with her insurance premium every month. We’ve been able to stay for her appointments and actually get a good night’s sleep because of the hotel support. It’s taken so much pressure off.”

Now almost five, Hadlee is thriving. She loves dinosaurs, the color pink, and playing outside. “She’s the spiciest little thing,” Stephenee laughs. “Thanks to Good Days, we’ve been able to focus on her and not the cost of her treatment.”

For this family, Good Days has meant more than financial relief. It meant peace of mind and the ability to fully embrace every joyful, unpredictable moment in Hadlee’s journey.

Donate to help people get access to care.→

Good Days Joins Patient Advisory Councils

Good Days is proud to join the Patient Advisory Councils of both the Institute for Gene Therapies and the Alliance for Regenerative Medicine. These invitations reflect our growing role as a trusted advocate for patients navigating complex treatment landscapes. Through these partnerships, we are working alongside leading drug manufacturers to identify opportunities to improve access, streamline care, and ensure the patient experience is at the center of medical innovation.

As groundbreaking therapies like gene and regenerative medicine advance, Good Days is committed to making sure those who need them most can afford, understand, and benefit from these life-changing treatments.