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Is there a place to donate your body for KD research after death?
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Picture of Lolo
Location: Arizona
Registered: 10-06-2010
Posts: 108
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My husband and I have been discussing what to do with each other upon our deaths. We both want cremation up till now. Lately, Bob has been thinking of donating his body to science if we can find a place that would use his body for furthering the research of Kennedy's Disease.
It's a subject that none of us really want to think about but both of us would rather know what the other wants rather than guess later. I also do not want to wait till he is sick to try and find a place that may do this kind of research, I want to know ahead of time so he will know too if he will have a straight cremation or if he can help science.

So, my question is, does anyone know if there is a place which accepts bodies right after death that will further research Kennedy's?
Picture of Pocatello Jim
Location: Pocatello, ID
Registered: 05-24-2008
Posts: 109
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That is a great idea! I Hope that it is a long time off for all of us. But I too would rather have my remains accomplish something rather than just rot in the ground.


Pocatello Jim
Registered: 05-07-2007
Posts: 46
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Have you seen the KDA webpage on donations?

http://www.kennedysdisease.org...issue-donation-guide

Ed
Picture of Bruce
Registered: 09-28-2005
Posts: 654
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Lolo, thanks to you and your husband for considering donating tissue for KD research. Ed has provided the link to the web page that explains a little about the process. Download the PDF version of the Tissue Donation Guide for more detailed information including the required forms. You will note in the guide that very little tissue and only specific tissue is needed for research.

Donated tissue is stored at the Univeristy of Michigan Brain Bank. Distribution of tissue is managed through the Scientific Review Board and has been used for several KD research projects.

You and your husband should discuss this opportunity with your family doctor. Bring the guide with you. Selecting a pathologist ahead of time really helps streamline the process.

You also should discuss your husband's wishes with the family.

If you have any specific questions, don't hesitate to ask. Again, thank you for your consideration.
Picture of Lolo
Location: Arizona
Registered: 10-06-2010
Posts: 108
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Thank you guys for responding! This wasn't a subject I really wanted to post as I didn't want to upset anyone yet I knew I had to because you guys would know the answer.

I will print out the info and we'll read it and make our decisions. I'm glad Bob is willing to help someone else once he is gone and I pray w have many more years together too!

Bob took another fall a few days ago, hitting his shoulder, elbow and ribs on cement and a nasty looking cut on his knee. He saw the Dr this morning and if he feels worse by Mon., he'll get x-rays. He fractured his wrist a year ago on a fall.
Picture of Lolo
Location: Arizona
Registered: 10-06-2010
Posts: 108
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I'm surprised to see there is a cost to the family to donate, any idea of the costs? Being that most of us are disabled, I'm a bit surprised about this plus the fact you are giving of yourself. This may change things for us as we may not be able to afford it if it is too costly??
Picture of Bruce
Registered: 09-28-2005
Posts: 654
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Lolo, sorry to hear about Bob's fall. I hope the injuries are nothing serious.

Reference the costs for a tissue donation, unfortunately, the KDA cannot pick up those costs. As you know, the KDA is an all-volunteer organization with very low overhead costs. Donations are the only way we can fund medical research.
Picture of Lolo
Location: Arizona
Registered: 10-06-2010
Posts: 108
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Bruce,
I'm not asking for KDA to pick up the cost, I am surprised there is one. Are you saying KDA is the sponsor of the program? If so, then I understand. I suppose it is the cost of an autopsy? Still, it will be something we will need to ponder since we really don't have extra funds but really want to help out the cause. I'll have to do some calling to get an idea of the approx. costs, talk it over and at least have it set up and make the decision based on where we are at the time.

Hopefully, Bob has no fractures. He seems to be OK, thank you for the well wishes.
Picture of Bruce
Registered: 09-28-2005
Posts: 654
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Lolo, Since the KDA is not a research facility or involved directly in any research, the role of the KDA is to:
- increase awareness to this opportunity
- as well as facilitate the process by making a guide available

We do this by making families aware of ways other than monetary donations to support KD research.

Donated tissue is never sold. The Scientific Review Board manages the donated tissue including the screening of all requests for tissue. The University of Michigan manages the actual storage and distribution of the tissue.
Registered: 08-02-2009
Posts: 206
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If anyone has any experience knowing what the actual costs are, that would be helpful to those of us deciding whether to participate in the program. Thanks in advance.
Picture of Bruce
Registered: 09-28-2005
Posts: 654
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The KDA website has an information guide to help those interested to learn more about the subject. The link is: https://www.kennedysdisease.or...program-10252013.pdf

The background information including a contact if your local doctor/hospital cannot help can be found here: https://www.kennedysdisease.or...-is-kennedys-disease

This message has been edited. Last edited by: Bruce,
Picture of ToddAllen
Location: Chicago, IL
Registered: 01-18-2008
Posts: 192
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Bruce's link to the tissue donation guide pdf didn't work for me, but here's a link to a KDA webpage with links to the guide in multiple formats.


Sorry, Todd, I meant to update my link and messed up your's.

https://www.kennedysdisease.or...program-10252013.pdf

This message has been edited. Last edited by: Bruce,
Registered: 08-02-2009
Posts: 206
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Bruce and Todd, thanks for posting those links, but neither one of them answered my question. What I want to know is, if I sign up for the Tissue Donation program, what will be the costs that my family will have to pay (approximately)?

The KDA document has:
quote:
Are there any costs or fees involved?
Yes, the family will be responsible for any costs related to the actual tissue collection process as well as the transportation costs to and from the medical center or university hospital where the tissue is collected.

Obviously this could be thousands of dollars and I would just like to have an idea of the approximate cost before I sign up.
Picture of Bruce
Registered: 09-28-2005
Posts: 654
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Sorry, I have not done it, so I cannot answer the question. Your doctor should be able to help answer some of the questions concerning pathology services in your area. Often, universities will perform this service.

For a general idea, contact the following service (bottom). Someone at this company should be able to give you a ballpark number.
quote:
Pathology Services
The KDA cannot endorse or recommend any pathology services. However, we are aware of one such service. Should you have difficulty locating a local service, you might consider contacting the following company. If you advise this service that you are an associate of the Kennedy's Disease Association, the company will offer a discount.

Regional Pathology and Autopsy Services is a nationwide provider of autopsy tissue retrieval for medical research and has protocols for handling tissue retrieval for Kennedy's Disease patients. RPAS has offices in many cities and also has traveling staff available to go where ever they are needed. Procedures are done in the funeral home the family is using for their services. RPAS offers a discount to Associates of the Kennedy's Disease Association and is available to help KDA families wanting to donate tissue where ever they may be.

REGIONAL PATHOLOGY AND AUTOPSY SERVICES, LLC
Nationwide Medicolegal Autopsy Services - DNA - Toxicology - Tissue Retrieval
PO BOX 16003 Oakland, CA 94610
Phone: (877) 330-7727
www.regional-pathology.com

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Picture of Lolo
Location: Arizona
Registered: 10-06-2010
Posts: 108
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Bob fell 2 months ago, broke his leg in three places! He wants his entire body donated to research so if nobody wants it for KD research, guess we will look elsewhere. He told me before he went into surgery but I was thinking, all of this MUST have to be set up way ahead of a death to be done properly. I had completely forgotten that I posted asking on here about donor donations. Wondering now if there is any whole body KD research happening?


God is the greatest physician of all.
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