Listening & Learning Together: Building A Bridge of Trust
Reported by Ann Fonfa, president www.annieappleseedproject.org
This meeting was held on June 19-20, 2006 at the National Institutes of Health campus in Bethesda, MD. It was “a summit for the cancer advocacy community hosted by the NCI Director’s Consumer Liaison Group (DCLG)”.
About 300 people attended – advocates from all over the United States, along with researchers, physicians, etc.
On the first morning two busloads of advocates toured various locations within the campus. I was shown the Children’s Inn where families of children in clinical trials stay for free. There is a communal kitchen – each family may buy their own food and cook it there, or some light meals are available.
The rooms (which we did not view) are sized for families – there are 59 of them. There are a variety of group rooms – play rooms, arts/crafts, computers, computer games, a business center for working parents to telecommute, etc.
The infant/toddler playroom is sterilized daily. I asked what cleaning products were used , thinking of the possibility for toxicity. The guide did not know. I did see that the public bathrooms are cleaned with the same toxic cleaners as in commercial establishments.
But since I am chemically sensitive and can usually tell when things ‘smell wrong’, I can say that I did not smell any overload of chemicals in their air.
I asked if there was access to a healthfood store, but again the guide did not know.
It was a lovely building with many amenities and parents/siblings of ill children can feel more comfortable in the location – plus it is very close to the clinic. (It is not only for children with cancer but those participating in any clinical trial – usually those who are quite ill).
Our next stop on the tour was the Clinical Center itself. An impressive building whose entrance is housed in a structure built in 2004. It leads immediately to an atrium with a soaring roof and seven floors. Our guide explained that they are working on putting up plexiglas at the railings on each floor to prevent potential suicides. A sad but realistic fear.
This meeting was held on June 19-20, 2006 at the National Institutes of Health campus in Bethesda, MD. It was “a summit for the cancer advocacy community hosted by the NCI Director’s Consumer Liaison Group (DCLG)”.
About 300 people attended – advocates from all over the United States, along with researchers, physicians, etc.
On the first morning two busloads of advocates toured various locations within the campus. I was shown the Children’s Inn where families of children in clinical trials stay for free. There is a communal kitchen – each family may buy their own food and cook it there, or some light meals are available.
The rooms (which we did not view) are sized for families – there are 59 of them. There are a variety of group rooms – play rooms, arts/crafts, computers, computer games, a business center for working parents to telecommute, etc.
The infant/toddler playroom is sterilized daily. I asked what cleaning products were used , thinking of the possibility for toxicity. The guide did not know. I did see that the public bathrooms are cleaned with the same toxic cleaners as in commercial establishments.
But since I am chemically sensitive and can usually tell when things ‘smell wrong’, I can say that I did not smell any overload of chemicals in their air.
I asked if there was access to a healthfood store, but again the guide did not know.
It was a lovely building with many amenities and parents/siblings of ill children can feel more comfortable in the location – plus it is very close to the clinic. (It is not only for children with cancer but those participating in any clinical trial – usually those who are quite ill).
Our next stop on the tour was the Clinical Center itself. An impressive building whose entrance is housed in a structure built in 2004. It leads immediately to an atrium with a soaring roof and seven floors. Our guide explained that they are working on putting up plexiglas at the railings on each floor to prevent potential suicides. A sad but realistic fear.
