Battling Rare Disease Every Day of the Year

Published: February 29, 2016  ~   0
By Laura King Edwards

Today is Rare Disease Day, a worldwide movement to raise awareness about rare diseases and their impact on patients’ lives. The effort targets the general public but also decision-makers such as policy makers and health professionals and biotech industry leaders.

I worked on the marketing communications team for a large, integrated health system for eight years. Early in my career, my mentor taught me not to focus too much energy on health awareness months, weeks and days at the expense of more strategic efforts. She said only a few of these movements really resonate with the general public, like Wear Red Day (always the first Friday in February), Heart Month, Stroke Month and Breast Cancer Awareness Month. continue reading →

Touchdown for Taylor: Five Years Later

Published: November 9, 2012  ~   0
By Laura Edwards

Five years ago tonight, a small but determined group of women known as “Taylor’s Tale” threw a huge party in honor of my little sister and kids everywhere fighting Batten disease. We called it “Touchdown for Taylor.”

Touchdown for Taylor house

When guests arrived, Sir Purr, the Carolina Panthers mascot, greeted them on the steps of the beautiful home of our gracious hosts.

Sir Purr

Inside, they mingled with former Batten Disease Support & Research Association director Lance Johnston and researcher Sandy Hofmann, MD, PhD, who had just gotten a $50,000 grant from Taylor’s Tale – the birth of a project of paramount importance in the fight against infantile Batten disease.

Lance and Sandy

They heard a special message from NFL commissioner Roger Goodell and watched a slideshow of my then 9-year-old sister’s life that still chokes me up. They heard from my mom. They heard from me.

Sharon and Laura

They heard a great band, enjoyed each other’s company and ate incredible food.

guests

They gave my family, just a little more than a year removed from Taylor’s diagnosis, a fire for the fight that burns to this day. And at the end of the night, they gave Taylor’s Tale $40,000 for that fight, matching our first-ever event, “Chapter One,” nine months earlier. Just as importantly, though, they energized us. They energized me. They helped me believe in my own words when I told people we’d find a way to beat Batten disease.

speech

Taylor is not the long golden-haired, sighted, chattering, singing fourth-grader my parents left at home with a babysitter on the night of Touchdown for Taylor. But she still has every ounce of courage she had back then.

And we’re still fighting.

Watch the Video Message from NFL Commissioner Roger Goodell

View More Photos from Touchdown for Taylor

Read My 2007 Blog Post about Touchdown for Taylor

Pink…for One Heck of a Price Tag

Published: October 1, 2012  ~   7
By Laura Edwards

Each October, the NFL celebrates Breast Cancer Awareness Month by going pink. Pink ribbons adorn the footballs and fields. Players wear pink chin straps, arm bands, towels, helmet stickers, gloves and cleats. Coaches wear pink hats. Referees blow pink whistles. Captains wear pink patches. Kickers boot field goals through goalposts mounted on pink bases.

Breast cancer is a terrible disease. Stage IV breast cancer’s five-year survival rate is just 15 percent. I hate any disease that steals people’s lives before they’re done with this thing we call living. Disclaimer: I’ve never lost anyone I love to breast cancer – though I’ve lost people I love to brain disease, heart disease and other equally horrendous things. But still, I hate breast cancer. One of my best friends lost her mother and older sister to breast cancer. I don’t have my own battle scars from breast cancer, but I’ve met it before. I know its name.

And yet, every year when October rolls around, I reevaluate this whole NFL pink initiative, and every year, I come to the same conclusion: I find it to be an incredible waste of money. Peter O’Reilly, the league’s vice president of fan strategy and marketing, says the NFL spent about $5 million on advertising and gear for the initiative JUST THIS YEAR.

Do you know what the rare disease community could do with $5 million?

If I could write a $5 million check to the world’s best Batten disease experts, I believe in my heart that they’d give us a treatment that works.

It probably wouldn’t be in time for my sister. But we might have a chance to save the children who aren’t as affected…children whose families sit where we sat six years ago. Weighed down by tragedy. Lifted up by hope for the future. For the possibility that Taylor could be different…that she could survive. We could rewrite the futures of the children who have yet to be born. We could change the face of Batten disease – an indiscriminate killer. Its survival rate is zero percent.

I repeat: breast cancer is a terrible disease, and while not nearly as common as some diseases, such as heart disease, it affects far more people than Batten disease. I’m not proposing that we stop supporting breast cancer research in favor of Batten disease research. Not one bit.

But if the NFL has $5 million to support a disease, why spend it on cleats? No matter what disease you’re fighting, awareness is incredibly important; just ask my family and friends or the Taylor’s Tale board of directors how much I push our awareness efforts. But at the end of the day, you don’t save lives with taglines and pink chin straps. You save them with smart research and strong advocacy efforts and strategic awareness tactics that rely on the strength and the magic of a great story.

That’s where I think the NFL misses the point. The league could still have an incredible impact by spray painting pink ribbons on fields, putting pink ribbon patches on jerseys, giving coaches and staff pink ribbons to pin on their shirts, and asking the broadcast team members to don pink threads – all for very little green. They could even air short interviews with NFL players and staff who are directly affected by breast cancer. Carolina Panthers running back DeAngelo Williams is a vocal supporter; his mother is a survivor, and he lost four aunts to the disease. A heartfelt message from a football star about the importance of getting a mammogram would mean something to fans.

The rest is just expensive noise. How many of the millions watching NFL football today have forgotten – or never seen – the true faces of breast cancer? The women – and yes – men – who fight courageous battles against the disease each and every day? That’s the stuff of legend – the stuff that will resonate with people – long after the players, coaches and refs resume wearing color-coordinated gear and the pink ribbons disappear. How many people never meet the stars of the story or learn a single thing about breast cancer risk factors but can proudly tell you that breast cancer’s signature color is ‘pink?’