Well, yes, I guess I am bragging. I just had to tell someone about my perfect week -- and it's only Thursday.
1. Valerie Graham and I were fortunate to be chosen to participate in the Clinical Research Learning Institute, sponsored by the Parkinson's Disease Foundation The institute is in New Jersey from Thursday, October 15, 2009 through Saturday, October 17, 2009.
The Clinical Research Learning Institute (CRLI) provides people with Parkinson’s disease with the knowledge and skills necessary to be effective representatives and advocates within the clinical research enterprise. This multi-day training prepares individuals for such activities as: educating the community about the importance of clinical research and study participation; serving as representatives on Institutional Review Boards (IRBs) and Data Safety Monitoring Boards (DSMBs); and providing research sponsors and investigators with input on trial design, implementation and evaluation.
Following the Clinical Research Learning Institute, the Parkinson’s Disease Foundation (PDF) will actively engage with graduates to offer continuing educational opportunities, to help identify community engagement opportunities and to encourage exchange and interaction among CRLI participants.
Expenses for attending the Clinical Research Learning Institute (registration, travel, hotel accommodations, meals, etc.) are paid for by the Parkinson’s Disease Foundation (PDF).
2. Tuesday, 9/15/09 -- Valerie Graham and I were tricked into going to the hospital for a DBS meeting during the afternoon. We entered the conference room in the neurology clinic and the neurologist, neurosurgeon and entire DBS team lined the perimeter of the room.
A man shook our hands and said that he was Mitch Jelniker from Channel 7 news. Valerie and I were awarded the "Channel 7 Everyday Hero Award" for our volunteer work with DBS patients and their families (DBS Patient and Family Liaisons at the University of Colorado Hospital and as co-founders and co-leaders of the DBS support group). Channel 7 taped an interview with us even though we had a stunned, deer-in-the-headlights expression on our faces. Channel 7 will air the short video clip six times during the week beginning Sunday, September 27.
3. Wednesday, 9/16/09 -- This morning, Valerie Graham and I were two of the people being interviewed by the second year medical students about living with PD and DBS. When I mentioned that I was plagued by problems with my voice and speech, they looked puzzled and said "what problems?" Each of the ten students plus two professors said that they could hear me and understand me loud and clear!!
Valerie and I have become the dynamic duo, the go-getters for Parkinson's. Thanks for letting me brag about us.
Kate Kelsall
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