Giving Good Days Newsletter – Winter 2024

A Letter from Our Leader

Dear Friends and Supporters,

As 2024 draws to a close, we reflect on a year of significant impact at Good Days.

This year marked the launch of our Neuromyelitis Optica Spectrum Disorder (NMOSD) assistance fund, expanding our support to include NMOSD alongside programs for HIV, small cell lung cancer, colorectal cancer, urea cycle disorder, and many other rare and chronic conditions.

In addition to growing our program offerings, our leadership in the Chronic Disease Alliance and collaborations with key groups like the Institute of Gene Therapy’s Patient Advocacy Advisory Council and the Safe Step Act Ad Hoc Coalition underscores our commitment to national patient care improvements.

In the past year, we have engaged deeply in initiatives and partnerships that drive research and ensure the availability of innovative treatments. We’ve been active participants in important industry conferences and summits, including hosting a Chronic Disease Day leadership summit at the ARPA-H Customer Experience Hub in North Texas.

Our impact is also felt through targeted regional initiatives, notably with the Cervical Cancer Prevention Action Network. This vital program, launched this year in partnership with the University of Texas Rio Grande Valley, addresses the Rio Grande Valley’s challenge of having the highest rates of cervical cancer in the country. By focusing on intensive research and robust outreach campaigns, we aim to tackle this critical health challenge directly in the region.

These efforts have not only advanced our mission but have also solidified Good Days as a cornerstone in healthcare advocacy. Looking ahead to 2025, we are committed to having an even greater impact, helping more people than ever before.

Thank you for your support and dedication. Together, we are making a significant difference, ensuring that more individuals can experience good days.

Warmest regards,

Clorinda Walley

President, Good Days

Re-Enrollment is now open!

Visit mygooddays.org/reenroll or text 972-608-7158 to re-enroll in 5 minutes or less.

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Client Profile

From Unexpected Joy to Life-Saving Care: The Field Family’s Journey with Urea Cycle Disorder

After years of trying and accepting the unlikely chance of having children, Ryan and Caitlyn were surprised and thrilled to learn of her pregnancy in 2022.  However, the joy of their daughter Sedona’s arrival was soon overshadowed by serious health concerns. At just two days old, Sedona began showing signs of lethargy and feeding difficulties.

Blood tests soon indicated a potential liver disorder, leading to her urgent admission to a children’s hospital in Austin, Texas. There, she was diagnosed with urea cycle disorder—a critical condition where the body cannot convert protein into waste, causing dangerous ammonia buildup that can lead to severe brain damage or death.

Sedona’s battle intensified in the neonatal intensive care unit, where she underwent emergency dialysis, a rare treatment for newborns. This procedure brought further complications, including a life-threatening blood clot from a dialysis tube and a severe infection that led to sepsis.

Ryan shifted to being a stay-at-home dad to manage Sedona’s care regimen, including a strict diet and frequent medical visits far from their local specialists. Although Sedona’s health improved, the family faced mounting financial pressures as they battled their insurance provider for coverage of her critical medications. During this harrowing time, Ryan and Caitlyn found financial and emotional relief through Good Days.

“Assistance from Good Days has meant that we can take care of Sedona and also afford rent, groceries, and unexpected bills,” said Ryan. “The travel assistance has been a huge blessing because the specialists Sedona needs to see are not near our town. Getting to them would not be realistic in our budget.”

Today, Sedona is 20 months old and thriving thanks to proper nutritional care and access to her medication regimens.

“I’ve contacted other nonprofit groups and never received the level of response I get from Good Days—graceful, professional, and empathetic,” added Ryan. “We are through the roof in our appreciation. Good Days has been an absolute blessing financially as well as mentally.”

What’s New?

In September, Good Days hosted the 15th annual Exchange, an event that celebrates the year’s accomplishments with our partners, supporters, healthcare professionals, and friends. This gathering highlights our continued leadership in breaking down barriers to healthcare access. Together, we strive to provide needed assistance, enhance education and awareness through partnerships, and promote equitable healthcare solutions.

This year’s theme, “Blazing Trails – Two Steps Ahead!,” featured a dinner and a performance by keynote speaker and country music star Chris Janson.

Platinum-selling artist Chris Janson lit up the stage with a live performance and engaging keynote discussion. An acclaimed singer-songwriter and multi-instrumentalist, Janson is one of the youngest living members of the Grand Ole Opry.

Several families supported by Good Days attended this year’s event. We are honored to serve and celebrate with them.

High school students Bella Qian (center left) and Mary Ellen Morrison (center right) were recognized for launching the Fighting Chronic Illness Campaign in their South Carolina hometown to raise funds for Good Days. They were honored by Good Days President Clorinda Walley (far right) and Chief Operating Officer Randie Odebralski (far left) for their impactful contributions.