Does anyone on this site know of a place that might want to study my husbands brain after he is gone? This is the most horrible disease and I thought it that would help find a cure I would like to do it....
Donating a body?: Does anyone on this site... - PSP Association
Donating a body?
Contact Robin Riddle at the Brain Support Network. She has helped many of us with brain donation. My husband's was done at the Mayo Clinic in Jacksonville, FL. Robin and her staff made sure that everything went smoothly when the time came.
Pat
Mayo in Jacksonville, Fl. Feel it was a very good decision bc the report confirmed what we suspected & that it was not an inherited disease. I had kept a very detailed journal which Mayo wanted & like to think mayb that was useful information that can b used to find a cure for these terrible diseases.
Pat in Tennessee
We have done all the prearrangements to donate my husbands brain to the Brain Bank at the Mayo Clinic in Jacksonville, Florida. I worked with Rachel R. LaPaille-Harwood, 904-953-2439.
Did donating his brain involve a cost?
Yes, for the pathologist when they collect his brain. I understand that it’s possible to get help from Joanna Teeter at CurePSP, but we have insurance that will cover the cost so I didn’t pursue getting help. They also requested prearrangement for the funeral home to avoid any delay when the time arrives.
I am so sorry to hear your loss. Just wanted to say that you are amazing for being willing to do that, bless you 🙏 It is very hard for the carers to make such a decision. Sending you hugs x
I believe you live in the US. Are you wanting to donate your husband's body (the subject of the post) as well as his brain? This is possible during the time of covid in only a few states in the US. Post-covid, things should get back to normal where joint brain/body donation is possible in almost every state.
As Pat mentioned, Brain Support Network has helped over 800 people with brain donation. (We help with four brain donations each week.) We coordinate with the family, hospice, care facility (if any), pathology provider, funeral home, and Mayo Clinic. If you would like our assistance (or are open to it), you can complete the "Soon" form on our website, brainsupportnetwork.org/soon. We will call the funeral home to learn if they are cooperative (not all are!) and will locate a pathology provider. (If the intended donor has covid, note that not all pathology providers are willing to do the brain recovery.) In almost all cases, the pathology provider charges your family a fee. In at least half of the cases, the funeral home charges your family a fee. On average, the fees in the US are $1000.
CurePSP offers all PSP families a grant up to $750. They no longer pay this in advance of the brain donation. (They used to in some financial hardship cases.)
Robin Riddle
I see Robin Riddle responded to your post. She helped us with my husband's brain donation. It's a process but she walked us through every step and was very helpful. I would contact her now while you're thinking of it.
You can let the doctor know that you would like to donate the brain for research. It does not take too much time after death, to remove the brain. The only thing I was surprised about when I read about it is that it will cost you between $500/$1000 to donate it.