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Dr. Patel and his Clinical Study team partnered with one of his patients, Linda Neenan. She has been participating in a Cervical Dystonia (CD) study and receiving compensation for her involvement. She chose to “pay it forward” by giving back to a Children’s Mercy charitable program called “Bags of Fun.”

This research study is looking at a new botulinum toxin to evaluate its use in treating CD. Current standard of care includes injections with botulinum toxin approximately every 3 months. The hope is to find a treatment that lasts longer with the same or even better benefit and low side effect profile. Linda was already established in clinic and receiving periodic treatments. When we told her about our CD study, she was interested and has been participating for over a year now.

Linda stated that she wanted to include Dr. Patel’s Clinical Research team in this heart-warming experience, because she felt her care with them has improved her daily life and was part of the reason she was able to give back to “Bags of Fun.” On October 1st, 2019, they went with her to put together back packs specially designed for children in need with life-threatening conditions or that are chronically ill. The items selected were very well thought out for each child and their family members.

For example, if they have autonomic dysreflexia and thus difficulty with temperature control, they put stuffed animals designed to be heated or cooled for the child to snuggle. They included stimulating toys for those with vision or hearing impairments, such as musical toys designed to be better heard or light-up toys that can be seen even with severe vision deficits. It was humbling and exciting to see the children and their family smile.

“Linda is a very positive person and such a pleasure to be around. I am glad she asked us to be a part of this. She wanted to maximize the benefit she gained by sharing with others in need.”- Adriane Arnold, DNP, FNP-C

 

Thank you Linda for your giving heart and letting us participate in your mission.

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