Christine Camp isn’t letting ALS silence her voice.
 
Diagnosed several years ago with the progressive neurodegenerative disease, Camp has been using her story to fight back against recent federal budget cut talks that threaten to limit or end critical ALS research programs.
 
“I learned that there are at least 30,000 people in the US that have ALS,” Camp said. “For as long as I can I want to fight for people to get the things that they need." 
 
Federal lawmakers have recently been discussing the possibility of cutting funding that supports clinical trials and studies into treatments for ALS, also known as Lou Gehrig’s disease. The move has sparked outrage from patients, caregivers, and advocates nationwide.
 
Unable to travel due to the progression of her illness, Camp turned to fellow advocate and ALS Association board member, Bill Soffel, who stepped in to carry her message to Washington, D.C.
 
“I've had the opportunity to meet with Christine several times,” Soffel said. “Her determination and strength despite this illness, is incredibly inspirational and I knew I had to take her message to D.C."
 
Soffel met with lawmakers, shared Christine’s story, and urged them to restore funding for the research patients are depending on.
 
"I'm very happy to say that the lawmakers and representatives I met with while I was there, all agreed to watch the video and hear what Christine had to say," Soffel said.
 
"In my video that I gave Bill I said that I was a frustrated Republican because this is not the Republican party I grew up with," Camp stated. "We are not treating people fairly or even giving them a chance."
 
ALS affects an estimated 30,000 Americans at any time. There is no cure, and most patients live just two to five years after diagnosis. Still, researchers have made significant progress in recent years — progress now threatened by budget rollbacks.
 
"In the past few years we have been seeing some major steps in treatment possibilities," Soffel stated. "That is what we are here to do. To find viable long-term treatments, to help this population, to find a cure. For the government to cut funds for the research now - it would be terrible."
 
“I am one of the lucky ones,” Camp said. “I have a village, and a wonderful family who care for me. But things need to change." 
 
Despite the challenges, Camp continues to advocate from home — raising awareness on social media and encouraging others to contact their representatives.
 
“This isn’t just about me,” she said. “This is bigger, and I hope that by using this platform I was given, that things will change."