Marissa Bishop
My blogs
| Gender | Female |
|---|---|
| Location | United States |
| Introduction | My journey with CDKL5 deficiency disorder began in 2016 when my infant son, Gregory, received the diagnosis. Hearing that my new baby would likely never walk or talk and would face a lifetime struggle with seizures, I felt utter despair and deep sadness. Over time, I transformed that heartache into purposeful action, and found meaning in making a difference for my son and for CDD. I hold a Master's degree in social work and am passionate about service and making a difference. I love connecting with other CDKL5 families, especially fellow CDKL5 boy moms. I believe that all people deserve to eat real food, even if by feeding tube, and I enjoy talking with others about blending for tube feeding. Creative by nature, I love all things design. Combining that love with skills in communications, marketing, and fundraising, I have been able to successfully champion the CDKL5 cause in a variety of ways. |
| Interests | CDKL5 in Color Podcast | On the CDKL5 in Color podcast you'll hear co-hosts Marissa & Amanda share lessons learned along the way as parent caregivers to children living with CDKL5 Deficiency Disorder, a rare developmental and epileptic encephalopathy. You’ll also hear voices from other members of the CDKL5 community sharing their experiences and insights. |