While Kendra and I have been playing independently in the rare disease sandbox for awhile, we have often crossed paths. This venture feels like life coming full circle for both of us.
I first met Kendra not long after my son Case was diagnosed with Hunter Syndrome in 2009. She helped me develop his first IEP (Individualized Education Program) when he turned 3 and started public school.
Before she was a neuropsychologist, she taught special education. She fused both of those specialties to test Case and recommend the best environment for him to learn and function. I learned a great deal from her as well.
She would go on to do impressive work engaging with industry, nonprofits, and others in the rare disease and neurodegenerative disorder space. In time, I co-founded Project Alive, a Hunter Syndrome research and advocacy foundation.
Fast forward
About 10 years later, I needed to develop several outcome measures to evaluate efficacy of an experimental therapy – Kendra was one of the first people I called. Not only is she extremely thoughtful about such challenges, but she draws from a wealth of expertise across diseases, clinical trials, and neurocognitive measures.
With her help, I designed four measures to evaluate the therapy, launched the measures, analyzed the data, and presented it to the FDA and to the sponsor. While the response from regulators and industry was impressive, we are continuing to develop and refine these measures, alongside of our other work for clients.
I could not be more excited to merge our efforts and offer a comprehensive array of services to clients who serve the rare disease and neurodegenerative disorder communities. Every project we do has an eye toward therapies and cures for people we know and love who work to live life to the fullest every single day.
– Melissa