Survivor Perspective on DIPG Congressional Briefing

 
Amelia Corl.jpg

Amelia Corl, one of our 2019 College Scholars, attended a Congressional briefing this month on DIPG Awareness, hosted by DIPG Advocacy Group in collaboration with Representative Jackie Speier. Amelia attended the briefing on our behalf as a guest correspondent and shared her impressions.

Others in attendance tweeted highlights from the event, some of which we share throughout this post.

“As a survivor of pediatric cancer, I often encounter people who cannot, and do not want to, imagine what I and my family went through. However, at this event I felt truly fortunate for the lifesaving treatment that was available to me. I’ve often been very grateful for my wonderful care team, but I’d always taken for granted the fact that my care team was able to save my life because funders had considered researching lymphoma to be a priority.

Children with DIPG are not so fortunate.

I think that the Congressional briefing certainly achieved its goal of raising awareness. Any guest in that room who had not previously encountered this disease had to have been struck by the severity of it and the urgent need for an effective treatment.

Although the passionate researchers and pleading parents would have been enough to convince me of this, no voice was more compelling than that of Jace Ward. As I have been ‘fortunate’ for someone with pediatric cancer, Jace has been ‘fortunate’ for someone with DIPG. He has already surpassed his 9 month life expectancy from diagnosis and seems to be responding well to experimental treatment. That being said, his future and the future of experimental treatments for DIPG are uncertain. His request - that the Congressmen and Congresswomen represented would support H. Res. 114 - was powerful, especially because - as he pointed out - he may not be able to advocate for it next year.

I was truly moved by the families that I met that were channeling their grief into advocacy. As a public health student, I understand that priority is a numbers game. Diseases that affect many people get research funding while those diseases that affect few do not. However, there has to be a consideration for the severity and life-threatening nature of childhood cancers.

No child and family should have to endure what these children and families went through.”

Use our action alert to ask your Representative to support the DIPG Awareness Resolution (H.Res.114):

 
Jessica Kean