Often there are things going on in HPSland that I just can’t blog about in detail in order to respect privacy. But this last week a few things happened that I want to mention in general terms.
Two HPS’ers agreed to give an incredible gift to HPS research, and to all of us, by making a gift of their tissue to the NIH. In both cases they were having surgery and contacted the Network to ask if the bits being removed could be of value to research.
Donna was in Washington this week on Capitol Hill and at a meeting of the Genetic Alliance and at NIH with Ashley. When I called to tell her of the offers, and ask what needed to be done, she got almost teary on the phone.
She said that for years she’s had to ask families to donate tissue during the worst of times. She was so humbled that people are now coming forward to make such an offer.
Sometimes NIH accepts the offer, and sometimes they don’t. It depends on the organ involved, the nature of the reason it’s being removed and the overall history of the patient etc. But we never know if tissue could be useful until we ask.
I want to say thank you to the HPS’ers that thought of all of us during their own medical crisis. I also want to remind everyone of the importance such gifts have for research. If you’d be willing to donate your tissue, let your family know so that in the event of a crisis, they can contact the Network and arrangements can be made.
Two HPS’ers agreed to give an incredible gift to HPS research, and to all of us, by making a gift of their tissue to the NIH. In both cases they were having surgery and contacted the Network to ask if the bits being removed could be of value to research.
Donna was in Washington this week on Capitol Hill and at a meeting of the Genetic Alliance and at NIH with Ashley. When I called to tell her of the offers, and ask what needed to be done, she got almost teary on the phone.
She said that for years she’s had to ask families to donate tissue during the worst of times. She was so humbled that people are now coming forward to make such an offer.
Sometimes NIH accepts the offer, and sometimes they don’t. It depends on the organ involved, the nature of the reason it’s being removed and the overall history of the patient etc. But we never know if tissue could be useful until we ask.
I want to say thank you to the HPS’ers that thought of all of us during their own medical crisis. I also want to remind everyone of the importance such gifts have for research. If you’d be willing to donate your tissue, let your family know so that in the event of a crisis, they can contact the Network and arrangements can be made.
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