That might've been Sun Health. If it was, Sun Health only accepts brain donations from people it has seen within the last 2 years and only for certain diagnoses. I had contacted them a few months ago about a patient's brain donation and body donation. The patient had CBD. Sun Health was not interested.

Mayo Jax will accept all diagnoses as well as normal brains (from healthy people).

It was not Sun Health, Robin. I'll try to find those papers. She gave me some application forms in case we were interested.

If it was body donation as well as brain donation, then it might've been Life Legacy, based in AZ. This is a business that sells body parts. They don't themselves conduct any research.

I think I've posted about them in the "Body Donation" thread started by SharonN.

Nope, that wasn't it.

Lynn,
We have many people in the local support group participating in various genetics studies as some have blood relatives with neurological problems. I was at a support group member's house for dinner last night and she pointed out that her husband is participating in these tests but does not want to know the results. So he's given instructions for the researchers not to share this info with him but has written a letter saying it's OK to share the info with specific family members upon his death. This puts control in the hands of the family members to decide for themselves if they want to know the info or not, and they are able to work with genetic counselors as well. You might consider setting up the analog for your family and your father's brain donation. Alternatively, you could make the decision that the brain is only being donated to further medical research, not for the purposes of receiving a confirmed diagnosis.
Robin

Hi Robin,
My husband is currently at a Hospice Care Center. I expect his death in a few days. I have contacted Mayo in Jax. They sent me paperwork and contact numbers for nearby pathologists. I have given all of this info to my funeral home and they are all aware of the time factor post-death.

My question...Is there anything further I should be doing? This was very important to my husband, daughter and myself and I certainly do'nt wish to mess it up.

Thank you

Sandilee



I sent this as an e-mail also but wanted to be sure you saw it

My dear, I am so glad you have the Hospice personnel to be with you at the end. Even though I had made all preparations here at our home for brain donation, when the time came everything was done for me because Mr Bobby had been moved into the hospital, under Hospice like care. I watched as if in a dream as the professionals went about their duties as planned according to arrangements made by Robin with the patient representative at the hospital. Even though I thought I would have been ready to tend to the final caregiving task, I was at ease to just step back and let others take over after all those years. The Lord was good to me by sending a nephew to let me stand and hold his arm and just watch while others did their tasks like a beautiful design.

I hope you can gain strength from the prayers being offered by those of us on this forum. We do care.

Dorthea

Sandilee,

I'm sorry to hear about your husband imminent passing. It's a very stressful time for the family. I hope his passing is peaceful.

I haven't seen a good outcome when these arrangements are turned over to the funeral home. (But there could be a first time for everything.) I've sent you an email. In short, please email me the funeral home's name and contact info, and I'll call them to be sure all is well. (Hope I can reach someone who knows something on a Sunday.) If it's not, I'll do complete arrangements, as I did for Dorthea (and several other LBDA Forum members).

Robin

Sandilee,
I see that you are in Wilmington, NC. I've made arrangements there before for a brain donation. I know the right person to contact about this but let me speak with the funeral home first to see if my help is needed.
Robin

Thank you Robin.... I have e-mailed the info directly to you

Dear Robin,

Thank you very much for all of your detailed help. He passed peacefully by my side with our daughter early Monday morning. Everything went very smoothly with preparations and transport. I do appreciate all of your efforts.

Sandilee

Sandilee, you have been on my mind all week and now that I hear, the tears start to flow for you and your daughter. Please accept my loving condolences and best wishes for peace and continued strength as you walk through this valley.

Dorthea

Sandilee,
My deepest condolences to you and your family on the loss of your dear husband. I'm glad his passing was peaceful. Thank you for making the arrangements for the brain donation; it's a very generous gift that will certainly go towards helping further the research into neurodegenerative disorders. I was privileged to have played a small role on Sunday. You and your husband were in very good hands (between Brenda and Dr. Kelly). I'm glad all went well. Best wishes to you as you start a different journey.
Robin

Sandilee - thank you for letting us know of your husband's passing. I am glad you were able to be there and that it was peaceful. My thoughts are with you, your family and friends at this time. Lynn

Sandilee,
Condolences for you and the family on the passing of your Husband, thank you for your wonderful gift to further reseach and maybe help someone else. I know it has been a long road and I pray you can find peace in the coming days, weeks and months, Now it is time to take care of you!