Welcome to the 2020 Round for a Cure!

Message from Ben

Hi everybody!

Welcome to the 2020 Round for a Cure!

Thank you for being with us today.  I know it has been a challenging year, and my family and I appreciate your generosity and dedication to this event.  This summer has been different, but I made the best of it. I completed a sophomore-level math class, took a writing class, swam nearly every day, played video games and spent time with family.  Along with everything else, I was very active in Boy Scouts.  I attended a virtual summer camp in North Carolina which included scouts from all over the world including Portugal and Somalia.  As part of the camp experience, I slept outside in our backyard in a tent for six nights in a row! I also attended the “National Camp In.”  This event featured a number of speakers including the co-founder of Apple and a NASA astronaut.  I also earned 13 merit badges and hiked over 30 miles (I still have two hikes to go before I earn this merit badge).

I want to offer a huge thank you to all of the donors and participants in this year’s event.  I hope you enjoy exploring the website.  Take a moment to visit my recipes and the auction.  Have a great rest of summer.  Please stay safe and I will see you soon.

Sincerely,

Ben Nelson

Ben Update from Mom

Thank you for joining us for the 2020 edition of A Round for a Cure.  We greatly appreciate your time and we hope you enjoy the “outing”!  I wanted to provide an update about Ben and what he has been up to.   

In March, North Middle School closed due to COVID-19, but school continued virtually. Ben is a very dedicated student and he did very well with virtual learning.  He woke up every morning and logged into his computer to work on and complete his assignments. Ben loves math.  Last year, he completed Geometry with his fellow 8th graders and completed Algebra 2 in an independent study program.  We are very proud of his hard work.  Overall, Ben had a great middle school career.  He was a straight A student and the student keynote speaker at graduation.  He was very honored (and only a little nervous) to take part in that event.

As Ben mentioned in his welcome note, he had a pretty busy summer through camps, swimming and other “socially distant” activities.  In particular, he had a wonderful experience with Boy Scouts, earning merit badges and participating in campouts.  Ben advanced to the rank of Life scout and now has his sights set on the rank of Eagle.

This week, Ben started high school (!?), and will be taking the first quarter virtually.  He is also planning on being part of the freshmen football team as a student coach which he is very excited about.

This past year, Ben continued to receive Spinraza at Children’s Hospital in Madison.  He had a treatment in June which went well.  In August, the FDA approved an oral version of the drug, which Ben would take daily.  We are evaluating a change.  It would spare Ben the quarterly lumbar puncture and hopefully have enhanced efficacy.  A recent focus has been on Ben’s weight and nutrition. He has had increased trouble with swallowing and had an esophagram and swallow study this summer.  In response, we changed his eating style and are focused on many light meals with soft foods throughout the day.  Our goal is to keep Ben’s weight up and to make sure that he is getting enough nutrients and calories. Ben tries very hard and tracks his calories on an app on his phone.

Ben is a trooper and is doing his best to take charge of his health as best he can.  He maintains a pretty positive outlook on things and keeps his focus on finding solutions rather than problems.  Thank you all for supporting him in his daily life and through your prayers and well wishes.  We are grateful and happy to have each of you in our lives. 

Thank you for joining us today!