Help Elinor raise money

My name is Elinor, and I'm a rising senior at Middlebury College. I took a class this spring called "Living with Illness" with Dr. Laura Basili, a wonderful and wise mentor (and friend!). Throughout the course, we learned about making meaning from hardship and the importance of support communities - concepts that Laura often illuminated with examples from CPN’s website. My class was fortunate enough to have CPN's founder and executive director, Blyth Lord, come and speak to us about the network’s origins and its mission. She mentioned that CPN had a few bibs available for the FRR, which I excitedly offered to fill!

I am lucky enough to have been paired up with a CPN Parent Champion, Lindsey Topping-Schuetz. Lindsey’s seven-year-old son, Owen, has Cri du Chat Syndrome along with a secondary chromosomal abnormality; he is currently the only person known to be affected by both of these syndromes simultaneously. Despite all of the challenges he has faced and the countless days he has spent in the hospital (not to mention time with pediatric clinicians, specialists, and occupational therapists), Owen’s spirit remains unafflicted. Lindsey reports that he is an absolute joy to be around – stubbornly marching to the beat of his own drum, unconcerned with others’ expectations of him. He loves to watch cartoons and spend time with his cousins, and he has recently found a new passion in horseback riding! And he has excellent taste in music; I knew that Owen and I were bound to be good friends when I heard that his current favorite song is “Drop It Like It’s Hot” by Snoop Dogg.

In addition to being a super-mom, Lindsey has been hard at work advocating for pediatric palliative care. She and the other Parent Champions intend to make palliative-informed, family perspectives the standard for healthcare providers and patient organizations to provide to families. They seek to empower parents caring for children with serious conditions, helping them feel connected to others and allowing them to process what is happening to them. Lindsey and Owen have been to the Washington State Senate to testify regarding the challenges faced by families affected by developmental disabilities, and recommended improvements to the state’s Medicaid waiver program. If you'd like to learn more about Cri du Chat Syndrome, Lindsey shared this video with me: https://drive.google.com/file/d/1oAE8Y201QKFEJ0fheRgzBf3zJROLG2ZD/view

As I’m nearing a year since I sustained injuries to my foot and knee in an accident last August, I’ve been reflecting on how lucky I am to have had so many people in my corner throughout my recovery. I’m confident I would not be able to do the things I can do today (including run seven miles!) without the support I received from friends, family, nurses, surgeons, physical therapists, coaches, teachers – the list goes on. In recognition of this support, and in acknowledgement of the support that CPN provides for their families, I am honored to represent such an incredible organization during the FRR this year!