Travel and Clinic Support fund was created in honor and memory of Tyler Kobuszewski, a sweet and loving child with dup15q syndrome who passed away in 2014 at the age of 13.
This fund is designed to support Dup15q Alliance Clinics and help families who have a need for their child seen at a Dup15q Clinic, but do not have the means to do so. With special emphasis to those patients struggling with hard-to-control seizures or other major medical issues (despite local treatment) get to a Dup15q clinic. Funds are limited, but the hope is to help as many families in need as possible.
Families hoping to benefit from Tyler's Travel and Clinic Support Fund should fill out the application below. The application will remain confidential, shared only with the clinic travel review committee. The committee will review the application, assess the urgency of the need for a clinic visit, and approve or deny the request (fully or partially).
Preference will be given to families whose child has very difficult to control seizures or do not have access to needed specialists and do not otherwise have the financial means get to a dup15q clinic. The child should have been seen locally and still is having difficulty controlling their seizures or other major medical issues.
A budget must be submitted with the application.
-The maximum amount awarded is $1000 per family.
-The fund will only cover up to two parents and the dup15q individual
-Funds are for a future visit only, not reimbursement for a past visit
-Mileage, airfare, hotel accommodation and food are reimbursable expenses, within the Dup15q Alliance Travel Guidelines.
The answers to this questionnaire will remain confidential and only shared with the review committee made up of a member of our clinics working group, a Board of Directors member and the Executive Director.
We were all puzzled when Tyler began having seizures. In trying for find help for him we exhausted every resource we could find in our area. When he developed a second type of seizure, drop seizures, we planned a trip to the Dup15q Center of Excellence at Massachusetts General Hospital in Boston. There we saw Dr. Ron Thibert, the head of the clinic. Dr. Thibert's knowledge of “our” kids is invaluable. He was able to adjust Ty’s meds, and over the next few months, the “drops” subsided.
The Dup15q Clinics are a critical component to creating targeted treatments for dup15q syndrome, and getting our children the best care possible. We had firsthand experience of the true difference they can make in the lives of our kids.