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August 2008

The NIH Clinic: in two perspectives

Jacqui Bromberg

On June 18, the very first Pediatric GIST Clinic was held in Bethesda, Maryland at the National Institute of Health (NIH). I am so fortunate to have been able to attend this clinic, which was open to all Pediatric GIST patients. Having been diagnosed with this rare disease for four years now, my mother and I were very excited to learn that there was an interest being taken at the NIH. The clinic was meant to give patients and caregivers the opportunity to meet with a panel of Pediatric GIST experts from all over the country. These experts shared their combined knowledge and provided us with a session to ask questions about our treatments and address any other concerns.

My mother and I flew down the day before the clinic and following a registration, were finally able to meet other GIST patients and caregivers. These amazing individuals shared with one another hope and encouragement.

Everyone gathered for a meeting where the doctors and those representing support groups introduced themselves and spoke, including myself and Ashley Young, on behalf of the LRG and Phyllis Gay on behalf of GSI. There was a very informative presentation on new research and the excitement regarding a promising chemotherapy treatment coming within the year. The evening ended with a relaxing dinner and plenty of time to rest for the clinic day.

My clinic day went quickly and was very useful. I was given several appointments through out the day, with breaks in between, with options to attend seminars on anxiety reduction and integrative therapies. The appointments were on time and every question and concern we had was answered.

My mother and I returned feeling that the trip was worth taking. We are so thankful to have had this chance to meet such inspiring people, everyone working together, all in hopes to find a cure.

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