A Conversation With Devon and Leah Still: Partnership With United Therapeutics

Last week, we had the fortune of catching up with one of the Penn State greats in Devon Still. We spent a couple of minutes talking about Leah’s experience, and in turn his, as Leah’s parent.

September is Childhood Cancer Awareness Month, and the Stills have partnered with United Therapeutics to launch “Braving NeuroBLASToma” in hopes to educate families dealing with the disease.

Lessons Learned

In talking with Devon, one of the first things he shared was the amount of resources available for people to take advantage of. He wasn’t as prepared to deal with the rollercoaster of emotions that a diagnosis like this brings, but is grateful for all the help Leah’s doctors gave him, as he didn’t have time to go out and do all the research he needed to on his own.

While there isn’t one specific thing he wishes he had known ahead of time, the concept of having a playbook available is something that he finds immensely helpful in retrospect, especially when, at times, some of the conversations with the doctors felt like they were speaking a different language. He hopes that by sharing these resources with families, they will be better prepared to deal with the challenges ahead. There are a lot of resources available for people to educate themselves on the topic of neuroblastoma.

Message

Leah’s message to other children dealing with neuroblastoma is “you’re not alone.” There are people, like her, who have gone through it, ready to support those going through the journey now. There’s light at the end of the tunnel, you just have to keep fighting.

Fondest Memory

Sneaking one Penn State question in, Devon’s fondest memory from his time with the Nittany Lions was running out of the tunnel against Michigan State in 2008.

Due to the number of injuries he’d experienced prior to that game (a torn ACL in 2007 and an ankle injury earlier in 2008), he didn’t think he’d be able to play another down of football, yet he went on to play 10 snaps against the Spartans in the game, three more seasons for the Nittany Lions, and a few more in the NFL.

How To Help

Whether you’re going through this journey yourself, are looking to support someone who’s going through the journey themselves, or simply want to get involved, there are a number of resources available at the Braving Neuroblastoma page where anyone can get involved. Some of the resources available include a series of free books (and other downloadable material) to help folks dealing with the disease.

If you’d like to learn more about Devon and Leah’s partnership with United Therapeutics, read on:

In honor of Childhood Cancer Awareness Month (Sep), United Therapeutics Oncology is proud to partner with former NFL player Devon Still and his daughter Leah, a pediatric high-risk neuroblastoma survivor, to launch Braving NeuroBLASToma – an educational initiative to support and provide comprehensive resources to families impacted by neuroblastoma, no matter where they are on the patient journey—newly diagnosed, in treatment, or after treatment and beyond.

Neuroblastoma is a rare solid-tumor cancer that can form in several places throughout the body— abdomen, spine, chest, or adrenal glands and most often develops in infants and children under the age of five. Each year, about 800 children are diagnosed with neuroblastoma, accounting for 7-10% of all childhood cancers in the United States. At time of diagnosis, nearly 70% of children will have advanced or metastatic neuroblastoma, with only half of these patients achieving remission.

Braving NeuroBLASToma features:

• A family-friendly toolkit with a resource-rich website, including a comprehensive library of information and resources such as questions for your doctor, navigating clinical trials, understanding treatment, and caregiver advice. 
• A series of four beautifully illustrated books, including the latest release of Zara Takes Off –inspiring hope and encouragement as family’s transition to life after treatment. The new release includes a personal foreword penned by Leah, sharing details of her personal journey. 
• Each book highlights different stages of the high-risk neuroblastoma journey, beginning with The Big Adventures of Little Skivolo that helps families understand diagnosis and treatment,  The Next Big Adventure of Little Skivolo that focuses specifically on the antibody therapy phase of treatment,Little Skivolo’s Big Book of Fun, an activity book to help entertain kids and families during hospital stays, and culminates with Zara Takes Off. 

United Therapeutics is continually focused on addressing unmet treatment needs in the pediatric neuroblastoma population and is committed to the ongoing care of children affected by this devastating disease. United Therapeutics aims to inspire families and children affected by this disease to be vigilant in all stages of their journey so, like Zara, they too can imagine themselves growing happy, healthy, strong, and brave. Together we can help educate many others around us and brave neuroblastoma. Please visit www.bravingneuroblastoma.com for more information!