Welcome, Emily! I’m happy to have you join us today to talk about a very important topic. In past years, you’ve run a March Madness promotion to publicize your inspiring and heartwarming Eternity Springs book series but this year you’re doing something different. Will you tell us about the special inspiration behind your 2017 March(ing) Madness project?
Hi PJ. Thanks for inviting me back to The Romance Dish!
I can tell you about my special inspiration for this year’s March(ing) Madness book giveaway, but I think I should show you, too. Meet The Gift, my precious new grandson who was born in January.
The Gift was born with cystic fibrosis, a life-threatening disease that affects the cells in the body that make mucus, sweat and digestive fluids. Normally, these fluids are thin and slippery, but in people with CF a defective gene causes them to become thick and glue-like. Instead of lubricating, the secretions plug up tubes, ducts, and passageways, especially in the lungs and pancreas. Some with CF say it feels like they are breathing through a straw. More than 30,000 children and adults in the US and 70,000 worldwide are living with CF.
Healing is an underlying theme in all of my Eternity Springs books. Since I’ve been doing a March Madness promotion each year since the first ES book came out, and I planned to participate in the CF Foundation’s Great Strides annual fundraising walk in May, combining the two projects and making March(ing) Madness 2017 a book giveaway with a purpose seemed like a great fit.
As you mention above, the purpose of this year’s project is to raise funds for the Cystic Fibrosis Foundation. Please tell us about the Foundation and the work they do.
When my son shared the heartbreaking news of my grandson’s diagnosis, I set out to educate myself about cystic fibrosis and the challenges that The Gift and his parents face.
I discovered that families have a great resource available in the Cystic Fibrosis Foundation. It is a proven leader in the field of rare disease research and is recognized globally for its unprecedented advancements. It is the authoritative source for information about the disease. At a particularly challenging time in our lives, our family reached out to the local CFF office. With kindness and concern and a fabulously informative website, they provided the facts we needed—rather than the horror stories internet searches provided.
When the Foundation was established, children born with CF were not expected to live long enough to start school. Today, thanks to research and care supported by the Foundation, many people with CF are living into their 30's and 40's.
The CF Foundation leads the search for new treatments and a cure. They’ve spent nearly 3 billion dollars on its mission and advancing new therapies over the past 25 years.. Virtually every approved CF drug available today was made possible because of Foundation support.
Research toward the ultimate goal—a cure—is promising. Currently, more than 25 promising therapies are in development. The Cystic Fibrosis Foundation funds that research.
One last, very important thing about the Foundation that I want to mention—they are careful stewards of every dollar raised in support of their mission. They are rated four out of four stars by Charity Navigator and are an accredited charity of the Better Business Bureau's Wise Giving Alliance, meeting all of its Standards for Charitable Accountability.
They are one of the good charities out there that you can feel comfortable supporting.
Thank you for sharing that information, Emily. It isn't always easy to know which organizations are worthy of our charitable dollars.
People may not be aware of what the diagnosis of Cystic Fibrosis means. Will you please share with us how living with this disease impacts a patient and their family?
Oh, wow. That’s an involved answer. Remember, we’re only three months into this new reality and I can’t speak for those who’ve been living with it for years.
From our perspective, it was a devastating diagnosis. I make my living with words, but I honestly don’t have ones to share what it meant to my son and his wife to learn that The Gift would be born with CF. To have this disease, both his parents had to be carriers of the defective gene and he had to inherit it from both them. Neither family knew we carried it, so it was quite a shock. This is usually the case for CF families.
As far as living with the disease, it’s high maintenance management. The Gift is pancreatic deficient, which means he can’t properly digest his food. At two weeks of age, he began taking enzymes to assist with that. He must take them every time he eats, for his entire life—or until we get that cure. He needs special vitamins and salt added to his food. (When you kiss him, he is a salty little guy.) As he grows, he’ll need chest physical therapy to loosen the mucus in his chest from one to four times a day. On average, CPT takes two hours per day. That’s a month out of every year spent having CPT!
It’s imperative to keep him away from anyone who might be sick. The common cold can be very serious for a CFer. Since he was born in January at the height of the cold and flu season, his parents kept him home except to go to his many doctors appointments. He’s getting out a little more now, but we are vigilant with the hand sanitizer. Having CF meant that being in daycare wasn’t safe for him, and that introduced a whole other level of financial stress to a family where both parents worked.
The bottom line is that cystic fibrosis will more than likely significantly shorten The Gift’s life unless that cure is found. That reality is enormously stressful for CF families. Our efforts focus on giving him as many tomorrows as we can manage, and since the doctors tell us the possibility of a cure is very promising, we are determined to see that he’s ready for it when it comes.
How can readers participate in March(ing) Madness?
It’s easy! To enter, all you need to do is to join Team Eternity Springs or make a donation in one of our team member’s name. You can do that at: Fight CF with Team Eternity Springs
Donations are not required to enter the giveaway, although of course, we hope you will. You can read more about the giveaway at: March(ing) Madness 2017
Over thirty authors have contributed books, raffle baskets, and swag to the giveaway. My publisher, St. Martin’s Press, and Grand Central Publishing have also sent boxes of books, as have my agents at the Jane Rotrosen Agency. My office is overflowing with books, so the odds of being a winner are great!
I've always been impressed with how the romance community rallies to support one another and this is just one more example.
Do you have a fundraising goal?
Yes! We hope to raise $10,000 and we are well on our way to achieving that goal. As I write this we have raised around $7500.
What if readers live in the Ft. Worth, TX area? How can they sign up for the actual walk on May 21st?
I’d LOVE to have readers join us at the walk! When you join Team Eternity Springs, you have the option of signing up as a physical walker or virtual walker. Sign up as a local walker and drop me an email to let me know you’re coming! I’ll have a Team Eternity Springs t-shirt for you!
Is there anything else you’d like to add?
My next book in the Eternity Springs series is A STARDANCE SUMMER and it comes out June 27th! I invite readers to come camping with the Callahan brothers this summer. :)
I already have this marked on my calendar. I'll go anywhere with your Callahan brothers!
Thank you for visiting with us today, Emily. I’ve joined Team Eternity Springs, made a donation, and am happy to spread the word about this worthwhile endeavor. I’ll also be keeping your precious “The Gift” in my prayers.
Thank you so much, PJ.
Readers, I encourage you to support Emily and her family in this endeavor by joining Team Eternity Springs, spreading the word on social media, and, if you are able, making a donation. A single dollar can make a difference for "The Gift" and others who live with a Cystic Fibrosis diagnosis.