Soar With Grace during June 2 event

Event raises awareness and funds for pediatric cancer research

by Eren Ta

Grace McGrath, who was diagnosed with DIPG, a rare brain cancer, died in August 2011. The Soar With Grace foundation was started by her parents to raise awareness and funds for organizations providing support and research for pediatric cancers. Photo courtesy of the McGrath family

WEDDINGTON – On her seventh birthday, Grace McGrath was diagnosed with Diffuse Intrinsic Pontine Glioma – a rare type of brain cancer – and nine months later, in August 2010, she passed away.

On June 2, Grace’s family – Jennifer, Sean and Nate McGrath – will host the first Race Against the Odds to benefit The Cure Starts Now, a nonprofit dedicated to funding research for pediatric cancers.

Jennifer Lassiter, a pediatrician who sits on the board of a foundation the McGraths started in honor of their daughter in 2011, Soar With Grace, said the goal for this event is to raise $15,000 to help with research for The Cure Starts Now and raise awareness in the community.

“The prognosis for DIPG (what Grace was diagnosed with) hasn’t really changed in the last 30 years,” Lassiter said. “There are just no new treatments that have added to survival.”

Grace’s dad, Sean, said the time since his daughter’s death has been “quite a journey, and continues to be so.”

“But as parents and having been through this, we really felt an obligation and (were) led to create awareness of DIPG,” Sean McGrath said. “DIPG is a very rare brain tumor and impacts about 150 children each year and we have an obligation to create awareness to the general public as well as raise funding, which we have found to be extremely limited when it comes to this diagnosis.”

Sean McGrath said in terms of research, when a child first receives this diagnosis, standard protocol is six weeks of radiation, but there have been no other treatment options in the last 30 years.

“And because the survival rate, fewer than 10 percent of children with DIPG will survive more than two years,” said Jen McGrath, Grace’s mother. “It’s kind of unbelievable to hear that.”

She said other than radiation, there are only a few clinical trials families can turn to, but they haven’t proven to be of any significance.

“We’re talking decades and they haven’t found anything yet and it all goes back to a lack of funding and research,” Jen McGrath said. “As Sean said, we just feel led to continue to tell people about DIPG. We didn’t even know what those letters meant until she was diagnosed, and not only do we understand at a horrible level, but all of her friends, the elementary school, the entire Weddington community witnessed and kind of went through the journey with us.

“They were alongside us the whole way, and it’s such a heartbreaking story and I don’t want to see another family have to go through this like we did.

“I don’t want to see that happen, especially 10, 20 or 30 years down the road. It’s unacceptable.”

And the Race Against the Odds, a national fundraiser for Cure Starts Now, is designed to do just that – raise money so The Cure Starts Now can give grants to universities and hospitals studying pediatric brain cancer, and DIPG in particular.

Race Against the Odds is held nationwide, but this will be the first event held in the Southeast. The Weddington event, a 5k, June 2 at 8 a.m., will start and end at Weddington United Methodist Church, 13910 N.C. 16.

And while this event is about raising money, for Lassiter and the McGraths it’s also about raising awareness.

May is brain tumor awareness month, and part of Soar With Grace’s mission is to raise awareness about these complex and often untreatable cancers.

Soar With Grace has been one of a dozen foundations instrumental in setting up a DIPG registry with The Cure Starts Now where doctors, patients and families can turn to learn more about the disease.

The website, DIPGregistry.org can also be accessed through the Soar With Grace website at www.soarwithgrace.org.

Lassiter, who has been on the board of Soar With Grace since the beginning, said this is the first registry of its kind.

Sean McGrath said many people ask ‘isn’t it hard?’ to carry on this foundation and this work with Grace gone.

“But one of Gracie’s wonderful traits is she was strong and brave, and during a lot of the treatment where she’d have to get radiation on a daily basis, she gave us strength by how she faced it head on, and we as a family were living without any regrets,” Sean McGrath said. “I even said in her service, even small pebbles make ripples, so in our mourning process, we owe it to Gracie and other families to make them aware of what DIPG is because prior to the diagnosis, they were four letters in the alphabet every kid should knows, but when a doctor tells you what it is and you absorb the reality of where you are, there’s no other option than to help where we can.”

Jen McGrath said Soar With Grace hopes to host Race Against the Odds every year.

“We feel really strongly about bringing the event to Charlotte and our friends and family close to us know that foundation (The Cure Starts Now) provides a lot of support for many families facing this diagnosis and they are doing wonderful things,” she said.

The McGraths both said one of the things that keep them both going forward is hope and faith they’ll see Grace again.

“We live with that hope,” Jen McGrath said.

And they said they’re not the only ones, as dozens of Grace’s friends from school have been the ones to sign up already for the June 2 event.

“This event gives them a tangible way to stay connected with her and I think that’s important for children to have that as well because they’ve lost someone just as we have,” Sean McGrath added.

The McGraths said they’re looking forward to the event, though it being the first year they’re not sure what to expect.

“But I’ve learned they say it takes courage to do this, but it also takes courage to help create awareness,” Sean McGrath said.
To learn more about Grace, the Soar With Grace Foundation, and the upcoming Race Against the Odds, visit soarwithgrace.org and www.thecurestartsnow.org.