Click here to download the Summer Newsletter

Two Family Members with the Same Diagnosis

Read How this Mother and Son Found Travel Assistance Through Good Days

Sarah was told she had Urea Cycle Disorder at a young age, but by the time she was 12 years old she had been adopted into a family that informed her otherwise. When she thinks back to her teen years growing up, Sarah remembers on and off sickness. 

“I suspected something wasn’t right, but I did my best to go about living my life,” says Sarah. 

She eventually learned she did suffer from UCD, a metabolic condition that makes it difficult for her body to convert nitrogen into urea. It meant that highly toxic ammonia can accumulate in her blood and result in irreversible damage or even death. Two weeks after her son Maverick was born, Sarah learned that he too was affected by UCD. 

“Every time he gets sick, I get very scared. His ammonia levels can go up extremely fast,” says Sarah of her son Maverick, who turns nine this November. “Several times we had to go to the ICU to make sure he was okay because there is no way to check his ammonia levels at home.”

Sarah must manage her and her son Maverick’s health carefully, watching what they eat and doing what they can to stay on top of their condition. Additionally, their UCD diagnosis requires frequent trips for hospital checkups. Faced with an hour and a half car ride to the hospital for each visit, Sarah needs reliable travel resources. Earlier this year, Sarah learned that Good Days offers travel assistance programs that help cover the costs of transportation. She is more than grateful they received approval for assistance.

“It was a really difficult time for me. I had just found out I was pregnant with my second child and had also lost my job,” says Sarah. “When I speak on the phone with everyone at Good Days they are wonderful, very kind and generous. They take the time to get to know you and you can tell that they truly care about people.” 

Sarah and Maverick cannot wait for the arrival of his little sister this August. These days, Maverick is doing especially great. He is reading at a level several years above his age and loves the Captain Underpants book series.

“He loves school work and loves to read. He is the happiest kid ever.” says Sarah. “We will be forever grateful for Good Days’ help, I hope everyone knows that.”

PARTNER PROFILE 

MULTIPLE SCLEROSIS ASSOCIATION OF AMERICA

Good Days strives to be a patient advocate whether we have funding available for a specific disease group or not. Our Patient Care Navigators speak directly with patients and their families and always make sure to provide referrals to support groups, foundations and disease-specific organizations that might also be able to support access to care, emotional, psychological or physical needs. 

The Multiple Sclerosis Association of America is one such valued partner. We spoke with Peter Damiri, Vice President of Programs and Services, to discuss MSAA’s work and the resources they offer those affected by multiple sclerosis. 

Good Days: In what ways does MSAA support patients with MS?

Peter: MSAA is a national, nonprofit organization founded in 1970. Our organization is dedicated to improving lives today through ongoing support and direct services to individuals with MS, their families, and their care partners.

MSAA’s free services help improve lives. We offer tools to help manage the ever-changing course of MS. These tools are part of our Shared Management philosophy, involving education, training, use of technology, and tools to promote healthy outcomes. Shared Management is a concept whereby both the patient and healthcare providers work together to achieve the best possible health outcomes. MSAA’s Shared-Management tools include our S.E.A.R.C.H.™ program to assist the MS community with learning about different treatment choices; a mobile phone app, My MS Manager™, and a resource database, My MS Resource Locator®.

One of the many programs offered by MSAA to assist the MS community involves funding support for magnetic resonance imaging (MRI) exams. Our programs also include a Helpline with trained specialists; award-winning educational videos and publications, including MSAA’s magazine, The Motivator; safety and mobility equipment distribution; cooling accessories for heat-sensitive individuals; educational programs held across the country; and a Lending Library among other services.

How can an individual apply for MRI funding? 

MRIs are critically important for the diagnosis and follow-up treatment and care of MS. Unfortunately, MS patients who are uninsured or under-insured may not be able to obtain an MRI exam to help determine a treatment course and other vitally important healthcare options. 

The MSAA MRI Access Fund assists with the payment of cranial (brain) and c-spine MRI scans for qualified individuals who have no medical insurance or cannot afford their insurance costs and require the exam to help determine a diagnosis of MS or evaluate current MS disease progression. For qualified individuals who have MS or are suspected of an MS diagnosis, MSAA will provide financial assistance with new MRIs or help reimburse costs for a previous MRI up to a capped spending limit. 

What are some of the other challenges when it comes to treatment and access to care for MS?

While it is very encouraging that there are 15 disease modifying therapies approved by the Food and Drug Administration to treat multiple sclerosis, the MS community can sometimes face barriers to care which involve having adequate health insurance or being able to afford the plan’s deductible and copay costs, finding the prescribed medication on the plan’s formulary, or having the flexibility to switch medications if deemed medically necessary. Also, finding a treating neurologist who specializes in multiple sclerosis, especially in rural areas of the country, can make it challenging for the person with MS and his or her family to receive the most accurate and up-to-date care as possible. 

To learn more about MSAA’s free resources, visit 
www.mymsaa.org or call toll-free at (800) 532-7667.

CHRONIC DISEASE DAY

REMINDER- JULY 10, 2018

Chronic Disease Day takes place each year on July 10th (7/10) to represent the seven out of ten individuals in the United States who succumb to chronic conditions such as all types of cancer, cardiovascular disease, stroke, diabetes, and other chronic and rare conditions. 

CD Day raises awareness on the challenges for individual access to care and promotes self-care best practices to reduce individual risk and national health care costs.

Everyone can get involved. Here’s how: 
•    Email us at ChronicDiseaseDay@MyGoodDays.org find out if your hometown and state recognize 
    Chronic Disease Day 
•    Get free copies of our newly published Simple Self-Care Tip Cards on July 10th at ChronicDiseaseDay.org 
•    Visit ChronicDiseaseDay.org to find our social media where you can share your story and learn how to start a Facebook fundraiser that makes more good days possible for people who suffer from chronic           illnesses
 

TRAVELING THIS SUMMER? DON’T FORGET…

Good Days is pleased to announce the opening of two new assistance funds for patients living with Spinal Muscular Atrophy and Chronic Noninfectious Uveitis.  

Spinal Muscular Atrophy (SMA) affects the motor nerve cells in the spinal cord, taking away the ability to walk, eat or breathe. It is the number one genetic cause of death for infants. SMA affects approximately 1 in 11,000 births, and about 1 in every 50 Americans is a genetic carrier. With innovative treatments we can now dramatically change that outlook and the quality of life for affected individuals. Our SMA program provides copayment, premium and travel assistance for eligible individuals.

Chronic Noninfectious Uveitis (CNIU) is a sight-threatening intraocular inflammatory condition characterized by inflammation of the uvea. It is responsible for 10-15 percent of all blindness. Thanks to treatments that can reduce risks associated with that disease, access to care can slow or decrease the likelihood of losing eyesight. Our CNIU program offers copayment assistance for eligible individuals.

To learn more, visit our website or call us toll free at (877) 968-7233, Monday-Friday, 8:00am-5:00pm (CST). 

HERE’S TO A SUMMER OF GOOD DAYS

CLORINDA WALLEY

We are here for you. Just a few words of support that can give a person the strength and confidence to continue fighting. When you have a chronic or rare condition, there can be many obstacles you face on a daily basis. And it often takes a relentless attitude to keep moving forward. Good Days is here to help remove barriers that keep people from accessing the care they need. Non-profit charitable assistance is a critical safety net for many people who live with rare, chronic, complex or life-threatening conditions. Our charity has helped hundreds of thousands of individuals who have no other options. We often hear back that the hope we provide gives people the strength they need to keep fighting. It makes our jobs truly worthwhile. It also drives us to grow our offerings so that we can better support the people in need. 

In the past few months we announced the opening of two new assistance programs. One for people diagnosed with Spinal Muscular Atrophy, a disease that  affects the motor nerve cells in the spinal cord, taking away the ability to walk, eat or breathe. The second, for people diagnosed with Chronic Noninfectious Uveitis, a disease which causes 10-15 percent of all blindness. Removing the financial barriers to treatment can dramatically change that outlook and the quality of life for affected individuals.

In addition to the individuals and families we serve, Good Days strives to be a resource for the public and for policymakers. Earlier this summer we recognize Chronic Disease Day on July 10 to raise awareness that seven out of ten individuals in the United States succumb to a chronic illness. We established Chronic Disease Day to raise the national dialogue on challenges with access to care and on what we all can do to decrease the number of people with preventable chronic illness. States across the country recognized Chronic Disease Day by issuing official proclamations for the day. We were also honored this year to host United States Senator Kevin Cramer during a Congressional luncheon in Washington D.C., where he commended our work and spoke on the need to continue making a difference for individual health as well as for our national healthcare system.

More recently, we’ve partnered with the Washington State Department of Health to provide recommendations on how to increase access to the financial support we provide for HIV/AIDS treatment and prevention. In the months ahead, we will unveil new and expanded partnerships with the National Comprehensive Cancer Network to support cancer survivors.

While we continue to fight for patients, it’s your support that makes our mission and work possible. Thank you. 

Sincerely,

Clorinda Walley, President

Good Days