Giving Good Days Newsletter – Spring 2024

CLORINDA WALLEY

Dear Friends and Supporters,

As we embrace the new year, we are thrilled to introduce our new quarterly newsletter, complete with a fresh look and enriched content. We’re committed to keeping you informed and inspired, with features including leadership updates, compelling stories from those we assist, and insights from remarkable individuals who stand with us. Additionally, we will provide the latest on available assistance funds and key organizational events.

We are particularly excited to announce the launch of our Neuromyelitis Optica Spectrum Disorder (NMOSD) assistance fund. NMOSD is a rare, inflammatory disorder that critically affects the central nervous system, primarily impacting the optic nerves, brainstem, and spinal cord. Individuals with less common conditions like NMOSD encounter unique challenges in accessing treatment and getting the support they need. Our assistance funds help bridge the financial gap for people suffering from NMOSD and many other conditions so that they can focus on their wellbeing.

Looking ahead, we eagerly anticipate the announcement of our 2024 Chronic Disease Day campaign. Chronic Disease Day helps improve access to care and lower the number of preventable illnesses through public engagement, congressional advocacy and educational events. Look out for more updates on this year’s virtual and in-person events coming soon.

Your support fuels our mission, and together, we continue to make good days better for those battling chronic illnesses. Here’s to a year of hope, healing, and groundbreaking achievements.

Warmest regards,

Clorinda Walley

President, Good Days

Turning Adversity into Advocacy: Mary and Bella’s Journey to Combat Chronic Illness

In the face of adversity, some find the strength to make a difference.

Mary, a high school student in South Carolina, transformed her struggle with Functional Neurological Disorder, POTS, Covid long haul, and Marfan syndrome into a beacon of hope for others. Unable to walk for four months, she battled feelings of isolation typical for teenagers facing health challenges. Yet, it was this journey of hardship that sparked the creation of the “Fighting Chronic Illness Together” campaign alongside her classmate Bella.

The initiative brought together a network of support and understanding among those battling chronic illnesses in their community. By selling light blue attire emblazoned with the campaign’s namesake phrase, they are raising awareness and donations for Good Days that will support others battling chronic illness. Mary and Bella even launched a podcast to get the word out about their campaign.

“I’ve felt so alone with my chronic illness but seeing how many people are willing to donate and take time out of their day is so impactful,” said Mary in a recent podcast episode.

“I was shocked at how many people participated,” added Bella. “It’s really amazing that everyone has taken the time and effort to acknowledge what we are doing.”

The community’s response has been overwhelmingly positive. Terratec, Inc, a local family-owned foundation repair business, has generously promised to match gross donations, bringing total funds raised to more than $3,000 so far!

Mary and Bella’s story is a testament to the power of resilience and the importance of community in navigating chronic illness. Keep up with their campaign by tuning into their podcast Chronically Aware on Spotify or by following them on Instagram @fightingchronicillnesstogether.

Meet our leadership at upcoming conferences and events:

Patient Assistance and Access Programs 2024

Philadelphia, PA

March 19-21, 2024

Paycor Connect+

Cincinnati, OH

April 23-25

Asembia’s AXS24 Summit

Las Vegas, NV

April 29 – May 2, 2024

Open Programs in Q1 2024