Author Archives: Kelly Wallis

Spreading Awareness on Social Media During the Pandemic

It’s hard to believe the world is still in the midst of a pandemic that reared its ugly head two years ago. These unprecedented times have disrupted so many lives in myriad ways. One specific way it affects the rare disease community is that many fundraisers have understandably had to…

My Daughter Continues to Surprise Me

This is an update to my last column. When we left off, my family was about to leave our home in Houston, Texas, and fly to California, where our daughter Abby is a participant in a clinical trial. I described my anxiety about flying with Abby and all…

Clinical Trial, Here We Come!

If you have been following my column, you know that my 26-year-old daughter, Abby, has been on the verge of being accepted into a clinical trial for Sanfilippo syndrome. I am here to announce that it’s official! She was recently accepted, and we will soon venture west again to…

Living in the Space Between Diagnosis and Death

What bookends to live between — diagnosis and death. This is a hard place to be, no matter where you fit in — the patient, the caregiver, or a family member or friend of any of these people. No one ever wants to be here, but sometimes it’s where we…

Lessons Learned From Unanticipated Positive Outcomes

This is a follow-up to my previous column about my 26-year-old daughter, Abby, potentially being accepted into a clinical trial. To recap, my husband and I were recently notified that she might be accepted into a clinical trial for a drug called Kineret (anakinra). Researchers will study…

Sanfilippo Can Get in the Way of Celebrating

I recently received exciting news! My 26-year-old daughter, Abby, has been selected to potentially participate in a clinical trial for a drug to help manage or minimize symptoms of her disease, Sanfilippo syndrome. My husband inquired about the trial over a year ago, and they contacted us recently…

Helping Others During Times of Grief

Grief has been a prevalent part of my life for the past year or so. My mom unexpectedly passed away early last year, and because of the pandemic, her burial and memorial service were postponed to this summer. I have spent a lot of time planning her service. This…

How Do You Respond to Grief?

I often think about grief, a feeling that everyone experiences at some point in their lives. Whether it involves the loss of a pet, parent, spouse, sibling, child, friend, or marriage, grief is unavoidable. Because it is such a common emotion, one would think that most people could easily discuss…