BTO STEM Initiative with UPMC Brain Institute

On Friday, September 14, 2018, David Flaugh, ALS patient, joined Rocco Scalzi to talk with high school students at Coatesville Area School District and Great Valley School District. David spoke to the students about his diagnosis and his hope for the students who are participating in this initiative to one day find a cure for ALS.

Students were greatly impacted:

“The talk we had with Mr. David Flaugh was very inspiring for me.”

“Mr. Flaugh really impacted my life….The fact that he keeps fighting means everything…He is truly inspiring.”

“…I feel an emotional pull now to put my full attention on finding even the smallest idea of a full cure. If I was able to get in touch with Mr. Flaugh, I would thank him for not only visiting and talking to us, (but also) staying strong and sharing his story.”

“Meeting Mr. Flaugh was a life changing experience. Talking about ALS and studying the effects is one thing, but seeing and interacting with an ALS patient puts all of that information into perspective. I will be eternally gratefully for meeting Mr. Flaugh and listening to his perspective on life….Having a positive person with such a grey storm cloud gives inspiration to anyone that crosses his path. Fundraising and advocacy are my next steps in spreading awareness for ALS. Anything I do for ALS research is dedicated to Mr. David Flaugh. I wish the best for him and his family. ”

“When Mr. Flaugh came to visit I was touched by his courage, strength, and positivity…When talking to David one on one he was very kind and he made me think about what I could do to help ALS patients in the future.”

” The way Mr. Flaugh talked about the daily struggles of ALS…makes me want to brainstorm ideas on ways to improve daily life such as head position, lifting weights and eating…I need to help in the fight.”

“The visit was really impactful…a real eye opener; I can now look at science as more than just science…that visit has now give me a reason to really pursue the study and approach it in a different mindset.”

“The talk…left a big impact on me…seeing how the disease actually affects people in real life is eye opening…he inspires me to want to spread awareness and find a cure.”

“…David.. is a strong fighter who I am pleased to have gotten the chance to meet.”

“…I have a reason to really pay attention and really learn what’s going (on). People’s lives are basically depending on this.”

“The visit…opened my eyes…made it something other than factual and objective when a real human being was involved.”

“Listening to how Rocco overcome the challenge of changing his life after losing his police badge was very inspiring. …hearing from Mr. Flaugh brought a strong human aspect to the class itself. It reminded that the work we put into this class could potentially change lives for future generations. His story helped me to picture the daily struggles that ALS patients and their families face both with caretaking, insurance companies, and keeping a positive attitude toward the diagnosis.”

Students Travel to Pittsburgh

On Thursday, September 27, 2018, approximately 70 high school students from Coatesville Area School District and Great Valley School District traveled to Pittsburgh, PA as part of Beating the Odds Foundation’s STEM initiative with the University of Pittsburgh Brain Institute. For the morning session, researchers from the UPMC Brain Institute presented to the students at the Soldiers & Sailors Memorial Hall and in the afternoon the students visited the research labs at Children’s Hospital in Lawrenceville for a tour of the labs that do ALS research. This unique STEM opportunity allows students to learn about neuroscience through the prism of ALS.

“…the trip experience was incredible. It was a great experience for the start of our journey of (a) discovery for ALS. It a great gift for the class!”

“Meeting with the experts was very educational and simulated a ‘college experience’ I very much wanted from this trip.”

“The speakers were great…My favorite part was being able to ask Dr. Donnelly and Dr. Pandey multiple questions about their research and what they think will help to find a cure. Hearing their ideas showed me that thinking outside the box is not always ‘crazy.'”

“It reminded me that science is not as easy as it seems.”

“I did not realize the cost of caring for someone with ALS/neurodegenerative diseases.”

“I did not know that ALS is 10-15 % …in family, and 85-90% (sporadic)…”

“The breakthrough about a gene mutation in worms that cured them from ALS made a lasting impression on me because it gives more hope in finding a cure and it makes me want to work harder so someday there can be a cure.”

“I liked the trip a lot…it was fun to meet the researchers…the lab work is interesting.”

“It was a great learning experience.”

“The little boy with SMA who is the first success story…reminded me that there is hope.”

“…talking to the scientists in their labs…was my favorite part and I could physically see what they were saying in the lecture…”

“The trip really impressed me. The planned activities kept me interested the whole time. Seeing the labs made me want to do my own research!…..Seeing everything made me want my own lab.”