Giving Good Days Winter Newsletter- 2022
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Meet Deena
"Keep Calm and Carry On" is her Motto
Up until last year, Deena was enjoying retirement in her south Texas community near family and where she spent most of her life. She had served as a nurse for more than 28 years in her county’s rural hospital. In her spare time, she and her husband Tommy were lifelong volunteers of the local fire department, helping to put out brush fires, direct traffic, drive the water truck, and attend to individuals who are having a medical emergency.
In January of 2022, a medical diagnosis upended both of their lives. Deena learned that she had Stage 1 multiple myeloma. It would be her second bout with cancer, after overcoming breast cancer 22 years prior. This time, at nearly $15,000 per month, the treatments needed to save Deena’s life were far too expensive to afford on her fixed income.
“When I heard the cost, it felt like a stomach punch,” said Deena. “It felt like I had the rug pulled out from under me.”
Until that moment, Deena had loved her days spent with children and grandchildren, many of whom lived within walking distance. Now, her days would be spent shuttling back and forth on a three-hour drive to see an oncology specialist, or managing the painful side effects of treatments. Travel expenses squeezed their finances even tighter.
From her days as a nurse Deena recalled that some drug manufacturers and nonprofit organizations offer assistance to people in similar situations. The first organization she found online was Good Days, which soon provided assistance to cover the costs of her travel.
“If my treatments were delayed it would have worsened my health, but I am not one to sit back and do nothing. I wanted to get started,” said Deena. “Everyone at Good Days was extremely kind and sympathetic to my situation. After speaking with them I came off feeling thankful and very relieved.”
Soon after, Deena would receive more good news when she learned that Bristol Myers Squibb would cover the cost of her treatments in full. With the help of Tommy, who served as a 24-7 caregiver, Deena soon regained her strength and wellbeing.
“I set out to make this as positive an experience as I can,” said Deena. “I was not going to let this turn me into a ‘poor me’ situation or become a person that my family could not deal with.”
With her life back on track, she has been able to focus on the things most important to her, including piano lessons for two of her grandchildren. Just before the COVID pandemic required that she quarantine, Deena put on a recital for family members to hear their progress. Now, Deena looks forward to future recitals and spending more time with those that matter most.
“My philosophy has been to keep calm and carry on and the Lord will show us a way out,” said Deena. “He has never failed me.”
PARTNER SPOTLIGHT
Electronic Medical Office Logistics (EMOL Health) LLC offers a variety of web applications that work to search, group, and organize medical information so that healthcare professionals, including the team at Good Days, can streamline and improve their processes.
EMOL Health was founded in 2006 by its CEO Brian Decker, who recognized the importance of compliance and increasing efficiencies when it comes to managing electronic health records. One of EMOL Health’s primary focus areas is the warehousing and aggregation of data for oncologists, pharmaceutical companies, and government and non-governmental third party payers through its Oncology Warehouse Language (OWL) system. OWL curates information that is vital to determine compliance to treatment guidelines, market strategies for pharmaceutical agents, cost and benefit analysis, and clinical research studies.
As experts in medical data collection, EMOL Health is able to determine where gaps in current medical charts exist. Between clinical visits with their providers, patients are still in need of evaluation and proactive interactions. There is valuable insight to be gained from what occurs during the time between patient appointments. With this in mind, in 2009 EMOL Health developed and released its Patient Reporting and Educational System (PRES). PRES Is used in at-home health provider settings along with provider offices.
In addition to its custom software platforms, EMOL Health provides information technology consulting, custom interfaces, and develops national standard compliance tools all with the goal of providing electronic solutions for medical information services.
Thanks to their expertise and innovations, Good Days is better able to serve the chronic and rare disease community. To learn more about EMOL Health, visit: www.learnmore.emolhealth.com.
(EMOL Health President, Brian Decker)
LISTEN: EMPOWERED US NETWORK FEATURED PODCAST
The Caregiving Soul, Episode 2: Shining A Positive Light on Neurodegenerative Care – with guest, Teepa Snow.
The experience of memory loss, neurodegeneration or neurodiversity affects all of us at some point in our lives – directly or indirectly. In this episode, you’ll hear from Teepa about her uniquely positive approach to guiding caregivers and caring for patients of all ages with these issues. Teepa and Dannelle will discuss how the words and physical language we choose can help develop a more compassionate relationship and how we can be part of changing the culture of care for people with neurodiversity.
To listen, visit www.EmpoweredUs.org or search for Empowered Us on your favorite podcast network.
AN EVENING WITH ACTRESS AND MULTIPLE SCLEROSIS SURVIVOR SELMA BLAIR
Each year, Good Days hosts The Exchange to bring key healthcare stakeholders, advocates, and patients together to help continue to drive awareness, advocacy, and assistance. This year, we were excited to welcome Selma Blair for a conversation on the power of hope, perspective, strength and community.
Throughout her diverse career, Selma has been one of the most versatile and exciting actresses on screen. Selma’s longstanding career began with her comedic roles in pop culture classics in the early 2000s. She has worked with an array of acclaimed directors and was named one of Time Magazine's People of The Year in 2017 as one of their Silence Breakers. Selma’s public battle with Multiple Sclerosis, followed by her outstanding performance in the nationally televised show Dancing with the Stars, make her an inspiration for all of us.
You can read more about the event by visiting www.mygooddays.org/events/2022-exchange
LETTER FROM CEO & PRESIDENT
CLORINDA WALLEY
As we approach the holiday season, I and the entire team at Good Days want to thank you for being a part of our community.
Our charitable nonprofit organization exists to serve individuals in need of access to medical treatments and quality healthcare. We’re proud to share that this past year we were able to assist more than 260,000 individuals with treatments that extend or improve their quality of life. That doesn’t include the millions of family members and loved ones we provide a positive impact on across the country as a result. With each household that Good Days supports, we work to build healthier communities for years to come.
This September we were honored to have hundreds of our operational partners and stakeholders join us to reflect on our work and discuss opportunities to further our mission at our 13th annual The Exchange. At each event, we invite special guests who inspire our efforts.This year we were thrilled to host Selma Blair, a celebrated actress and chronic disease advocate, who discussed the power of hope, perspective, strength and community. Selma’s public battle with multiple sclerosis and struggles to access needed care illustrate many of the challenges any of us face when dealing with an unexpected health diagnosis. Thank you to everyone who was able to join us for a heartwarming and energizing conference.
To cap off 2022, I am proud to share that Good Days was again named a top-rated charity by GreatNonProfits.org, the leading platform for community-sourced stories about nonprofits. The feedback and support we’ve received throughout this year motivate us to continue our mission to lift the burdens of chronic illness through assistance, advocacy and awareness.
We appreciate the generous support of our donors that makes our mission possible. Together we will continue to make a difference in the lives of hundreds of thousands of people across the country. Have a wonderful holiday season and a Happy New Year.
Sincerely,
Clorinda Walley
Clorinda Walley
CEO & President
Good Days