Giving Good Days Fall Newsletter- 2021
Meet Jeff and His Wife Shauna
A Cancer Survivor Found Help When the Pandemic Stopped him from Working
On the very same weekend he completed his master’s in business administration degree, Jeff was diagnosed with lymphoma.
Jeff was told by one of his doctors that nothing more could be done and that end-of-life care should be discussed. At one point, after receiving what was supposed to be a final bout of chemotherapy treatment, Jeff, his family, and his doctors were dismayed to find a new tumor at the base of his skull that would require full brain radiation.
Unwilling to give up, Jeff was transported to the University of Nebraska Medical Center via air ambulance where he would receive an allogeneic bone marrow transplant. Today Jeff is cancer free!
Before he was diagnosed with cancer, Jeff enjoyed working as an emergency medical technician in Bloomington on the campus of Indiana University, where he met his wife, Shauna. Before his diagnosis, Jeff especially enjoyed playing the steel guitar and banjo while touring local venues with the country band he was a part of.
With the onset of the COVID-19 pandemic, Jeff found himself unable to be exposed to public or earn an income due to the threat the virus posed to his health.
“I had been unable to work during the pandemic before vaccines were available because I am highly immunocompromised. I had to be really careful,” says Jeff, who was relieved to learn that he was eligible for assistance for essential non-medical expenses through the COVID-19 Emergency Relief Fund that was offered by Good Days.
“We just want to thank Good Days,” says Jeff. “We used our grant to purchase groceries and we really appreciate the support.”
Through the most challenging times of his battle with cancer, Jeff relied on the rock-solid support and positive attitude of his wife Shauna.
“I have been the primary caregiver but have not done it alone, not by any stretch of the imagination,” says Shauna. “When Jeff got sick, I quit my job. I have since gotten back to working with other families that are going through similar experiences and I really love it. In our hurting world, there is still good.”
As she supported her husband, Shauna found strength in writing about their experiences. Those stories would eventually fill the pages of her published book, Blood So Beautiful: A Journey with Cancer and the Redemption and Power of Blood, which was released last September on the five year anniversary of Jeff’s bone marrow transplant.
“I do not know why I got cancer. There is no answering that question.” says Jeff. “But we want to share our story with as many people as possible. If we can help one life it is worth it.”
The American Autoimmune Related Disease Association
The American Autoimmune Related Diseases Association (AARDA) is the only national nonprofit organization dedicated to bringing a comprehensive approach to autoimmunity. Autoimmunity is the major cause of more than 100 serious chronic diseases and impacts approximately one in five people, with women more likely to be affected than men.
Although there are more than 100 known autoimmune diseases, there is a general lack of knowledge and awareness about autoimmunity. This often results in misdiagnosis for thousands of Americans each year, which can lead to long-term health implications.
“I was in and out of the ER three times one weekend because the doctors did not believe the pain that I was in,” said Lilly Stairs, the interim CEO of AARDA, during a special Chronic Disease Day event hosted by Good Days in Boston, Massachusetts earlier this year. “I did not know what a patient advocate was at that time, but I knew that’s what I was destined to do. There are millions and millions of people living with these conditions, but people don’t know about them.”
AARDA’s goal is to advance research, funding, and early detection to both prevent and discover cures for all autoimmune diseases. The organization focuses on offering education, public awareness, research, and patient services.
Lilly is a known leader in the patient advocacy community and is also the founder of Patient Authentic, where she helps healthcare organizations build meaningful campaigns, programs and educational resources. She has extensive experience working across the healthcare ecosystem, encompassing work in clinical trials, health tech, disease education and policy.
“There are so many patients that do not access to the care they need and deserve,” said Lilly.
“I truly believe that by working together, we can help close that gap.”
If you or a loved one has been diagnosed with an autoimmune disease, visit https://www.aarda.org/ to learn more about resources and services that may help you.
I Stay Strong
Thank you to the thousands of people who shared who they are staying strong for this past Chronic Disease Day. Good Days will always stay strong for you!
A MESSAGE FROM THE PRESIDENT
As we enjoy the last weeks of summer and enter the autumn season, I could not be prouder of the impact that Good Days has had thus far this year.
Our copay, premium and financial assistance programs continue to support more than 200,000 patients annually in their time of need thanks to the generosity of our donors and dedication of our team. We are grateful for our ability to offer a diverse array of Americans who have pre-existing conditions, and are especially at risk of complications from COVID, with critical access to care resources.
In addition to the charitable assistance we provide, Good Days is expanding its reach and impact as an advocate for the chronic and rare disease community. This past July, 31 states and major cities, from Albuquerque to Chicago to Honolulu, joined us to officially proclaim July 10, 2021, as Chronic Disease Day. Our charity brought together dozens of national patient advocacy groups to support our efforts to build healthier communities and promote access to care.
With preventable illness on the rise, Chronic Disease Day is an opportunity to reevaluate how we can work together to lower the lower the number of preventable illnesses and better support those with unpreventable conditions. We were honored to have senior leaders from the Centers for Disease Control and Prevention, the National Institutes of Health and Members of Congress collaborate with us to produce a series of publicly available video webinars on caregiving, health equity and the impact and future of COVID on individuals with pre-existing conditions.
Although Chronic Disease Day 2021 has passed, our work to lower the number of preventable illnesses and increase access to care continues every day. You can always find more information, resources and video webinars at www.ChronicDiseaseDay.org.
Later this September we look forward to connecting with our industry partners, colleagues and fellow advocates at our annual The Exchange event. This year’s theme: Dare. Dream. Do. speaks to the resilience and positive attitude of those we serve.
We thank all our donors, partners and the entire team at Good Days for helping us advance our mission to support others in need.
Clorinda Walley, President