“I WAS BLOWN AWAY BY THEIR COMPASSION FOR SOMEONE THEY DIDN’T EVEN KNOW”

Joseph’s Quality of Life has been Improved with your Help!

Almost a year ago, Joseph went to the doctor to find out why he felt fatigued all the time. He received some surprising and hard-to-swallow news: He had myelofibrosis, a rare but serious bone marrow disorder. 

Only about 16,000 people in U.S. have this disease. Myelofibrosis disrupts your body’s normal production of blood cells. The result is extensive scarring in your bone marrow, called fibrosis, which causes pain and other side effects. Currently, a cure for myelofibrosis does not exist so treatment focuses on symptom management.

As you can imagine, Joseph was dismayed when he received the diagnosis. In addition to reconciling how to manage the disease, he was soon hit with another obstacle: the medication he needed to feel better costs $12,000 a month. His insurance would cover 50 percent, but only after he met his $5,000 deductible.

This retiree’s head was swimming trying to figure out what to do. He left the doctor’s office, went home and started to think about what he could sell, possibly his house, and then about how it would affect his family.

“My grandson, I suppose like all grandsons everywhere, is quite a remarkable lad. For me, the saddest part of having a remedy almost within reach, yet still so far away was that I might not get to see the fine young man he becomes. I was very much looking forward to that,” Joseph says.

Gratefully, Joseph had a very caring patient navigator at his doctor’s office who called Good Days on his behalf. She then called Joseph with the good news: Good Days was taking care of out-of-pocket costs for his medication.

“I feel enormously grateful for Good Days. It’s not about the actual amount of money, it’s about the difference it’s made in the quality of life. They have given me life itself.”

 “She said I was approved, and they would work out the details later,” Joseph shares. “I was blown away by their compassion for someone they didn’t even know.”

The medication Joseph now takes regularly is not a cure, but it does slow the progression of the disease. This allows Joseph a chance to continue living a more normal life and have more time with his precious family—especially his 9-year-old grandson.

“My grandson doesn’t know about my disease, but someday when he’s older, I hope to share with him how people who don’t even know him helped us and gave us more good times,” he says.

Joseph still deals with fatigue, anemia, an enlarged spleen and sometimes nausea. But he says, “This is pretty manageable, in fact not too bad. There are some much more horrible diseases. I’m lucky to not be in pain.

Joseph also had a special thank you for the caring people like you who support Good Days: “I want to express my gratitude for their generosity, of course, but also for their compassion that moves them to help someone whom they’ve never met who may be in another part of the country.

“In a few years, I’ll tell you who my grandson became, and I will tell him how you helped make that possible.”

THANK YOU for helping this grandfather have more Good Days with his family through your support.

UNDSERSTANDING MYELOFIBROSIS

2021 RE-ENROLLMENT

Myelofibrosis (or MF) is a rare, but serious bone marrow disorder that disrupts your body’s normal production of blood cells. The result is extensive scarring in your bone marrow, called fibrosis. As scar tissue builds up, the bone marrow can’t make enough blood cells, which leads to severe anemia, weakness, fatigue and, often, an enlarged spleen. This is because the spleen partially takes over making blood cells.

Myelofibrosis usually develops slowly. In its very early stages, many people don’t experience signs or symptoms. 

But as disruption of normal blood cell production increases, signs and symptoms may include:

Feeling tired, weak or short of breath, usually because of anemia
Pain or fullness below your ribs on the left side, due to an enlarged spleen

•    Excessive sweating during sleep (night sweats)
•    Itching
•    Fever
•    Frequent infections
•    Bone and muscle pain

•    Pale skin
•    Easy bruising
•    Easy bleeding

Many people with myelofibrosis get progressively worse, and some may eventually develop a more serious form of leukemia. Yet it’s also possible to have myelofibrosis and live symptom-free for years. Treatment for myelofibrosis, which focuses on relieving symptoms, can involve a variety of options.

WE CAN BE HEROES

2016 Exchange Conference Brings People Together to Discuss Ways We Can Help Chronic Disease Sufferers

On September 14-15, 2016, Good Days from CDF 
will host its 10th annual EXCHANGE Conference. The EXCHANGE is designed to provide exceptional educational and business networking opportunities with thought leaders and peers throughout the healthcare industry. 

This year’s event theme is We Can Be Heroes—because there is truly something everyone can do to help ease the burden for chronic disease sufferers. Speakers include:

John Crowley

John Crowley’s involvement in the biotech industry spans more than a decade, stemming from the diagnosis of Pompe disease in his two youngest children. He would become co-founder of Novazyme Pharmaceuticals, a biotech company that was committed to developing a treatment for Pompe. Within a year, the company grew by leaps and bounds and his efforts would ultimately help lead to an innovative enzyme therapy that saved his children’s lives and many others.

Dick Hoyt

A wheelchair has not stopped Dick Hoyt’s son, Rick, from living a full life—or even slowed him down. Despite the challenges of being born as a spastic quadriplegic with cerebral palsy, this duo has spent the last 37 years competing in over 1,100 athletic events as “Team Hoyt.” In between the marathons and triathlons, Dick travels the country to educate others about disability while encouraging a healthy mindset. It’s his way of shining a bright and uplifting light on the world of disabilities.

Bill Rancic

Bill Rancic burst onto the national scene when he was hired by Donald Trump as the winner of the first season of NBC’s breakthrough program The Apprentice. A published author of a New York Times best-selling book, Bill wrote You’re Hired: How to Succeed in Business and Life and has made regular appearances on a variety of television shows. Today, he is one of the most sought after motivational speakers on the subject of entrepreneurship and business.

Tom Brokaw

Regarded as the most popular news personality in the U.S., Tom Brokaw is an award-winning journalist, author and an inspiration to many. Over the course of his career, he became the only person to host all three major NBC News programs: The Today Show, NBC Nightly News and Meet the Press. Despite his diagnosis with multiple myeloma, Brokaw has continued his work with a heartening outlook on life. His ongoing battle has been a true testament to the power of optimism, perseverance and will.
To learn more about this exciting event go to http://www.mygooddays.org/the-exchange

FROM OUR EXECUTIVE DIRECTOR

CLORINDA WALLEY

This year’s theme for the 2016 Exchange conference is We Can Be Heroes. 

Our speakers this year have found a way to be heroes to those suffering with chronic diseases. For example:

John Crowley had two children born with Pompe disease. There was no treatment at the time, and then he set out to find a therapy for his children and formed a pharmaceutical company, found a treatment and brought the drug to market to treat his kids—and save many other lives.

Dick Hoyt, whose son was born a quadriplegic with cerebral palsy. The father has taken him on marathons and triathlons across the country, encouraging a healthy mindset. He’s very encouraging and is known for saying, “The only boundaries you have are the ones that you set upon yourself.”

And then there’s our keynote speaker, news anchor and chronic disease sufferer, Tom Brokaw, who has remained optimistic and productive despite his diagnosis of multiple myeloma. In fact, he wrote a memoir about his experience, A Lucky Life Interrupted, which offers a message of understanding and empowerment, resolve and reality, hope for the future and gratitude for a well-lived life. And as a New York Times bestseller, this book has no doubt comforted and encouraged others facing similar challenges. 

Each of these people found a way to use an illness that either affected their lives or the lives of people they loved to help others. It’s truly inspiring. And in my book, they are heroes. 

But did you know that you are a hero too? 

Every time you choose to give to Good Days, you are a hero to someone who is living with a chronic illness. Because you care, they can afford the medicine they need to live a better, happier life. Because of your simple act of kindness, they don’t have to worry how they will pay to fly to see a specialist. You do this and so much more through your financial support. 

Thank you for being a true hero to Good Days and the patients we serve!

Sincerely,

Clorinda Walley, Executive Director

Good Days