how to donate your body for lyme research

Guidelines for Brain and Tissue Donations for Lyme Patients

The Paul H. Duray Pathology Fellowship Fund

Guidelines for Brain and Tissue Donations

 

The Paul H. Duray Pathology Fellowship Fund (PHD-Fund) has many aspects. Our number one mission is to do pathology based research on Tick Borne Illnesses and look for infectious etiologies in neurological disorders such as: Alzheimer’s disease, Multiple Sclerosis, Lewy Body Dementia, Parkinson’s disease, ALS, and chronic Lyme disease/Neuroborreliosis.

Our fund also pays for the training of new microscopists to train them in our proprietary pathology techniques, and proprietary fluorescent staining for Borrelia species. Our fund also pays for the creation of new state-of-the-art FISH stains for more bacterial species, and parasites.

Our Study Criteria

The patient criteria to meet our study guidelines for registry for free brain autopsies are difficult and stringent. However patients that do not meet our study-criteria can still pay a minimal amount to have their tissues harvested and prepped for study to look for Borrelia and other organisms within the brain. After the family pays the expense of tissue harvest and tissue prep, then we do all the research for free and report back to the family the results. We retain the right to use the data for publication.

We try to preregister potential patients for our publishable-work by looking at the following criteria:

  • How long the patient has been sick?
  •  Are they sick at the time of their death?
  •  Did they have a history of diagnosed Lyme disease or Relapsing Fever?
  • Do they currently have a serious neurologic disorder like: Alzheimer’s
  • Dementia, Lewy Body Dementia, Parkinsons or MS?
  • Has the patient been previously treated aggressively with antibiotics?
  • What has been the patient’s lifetime exposure risk to Lyme disease? (High or Low?)
  •  Did the patient’s occupation put them at higher risk for tick bites?

We are especially interested in retired Forestry Workers, Rangers, Outdoorsman, Farmers, Large animal Vets, or any workers exposed to ticks on a weekly basis. How long the patient has been sick? • Are they sick at the time of their death? • Did they have a history of diagnosed Lyme disease or Relapsing Fever? • Do they currently have a serious neurologic disorder like: Alzheimer’s Dementia, Lewy Body Dementia, Parkinsons or MS? • Has the patient been previously treated aggressively with antibiotics? • What has been the patient’s life-time exposure risk to Lyme disease? (High or Low?) • Did the patient’s occupation put them at higher risk for tick bites?

For those patients that are pre-registered and pre-approved, the Paul H Duray
Fund will cover all costs of the brain autopsy, except the cost of the initial
tissue harvest by the patient’s local pathologist. The family must agree to
cover this one and only cost which can vary from a few hundred dollars to
$3,000 depending on what is harvested and what State the harvest is done in.
In some cases hospitals will pay for tissue harvest and will only charge for
shipping tissues.

Patients who do not meet the requirements for us to pre-approve them into our research can still contribute to the PHD-Fund to have autopsy research done. We are the only organization dedicated to pathology work on Lyme disease patients! We are the least expensive and have tools other labs do not have.

If you or a family member wishes to donate any organs to our research the following steps must be taken and the family prior to death should put some monies aside to harvest the tissues needed, and to prepare them for research.

Five steps to complete to expedite a brain-autopsy

1) The immediate family must be included in the patient’s plans and informed of each step. (Surviving family members who do not understand the need for this research often stop tissue harvests and autopsies.) The family member left with the legal responsibilities must sign the patient consent form. (Patient Consent Form Attached Below)

2) It is best to put all the patient’s wishes in writing, and the best place to do this is an open codicil to a will that explains the desire for a brain autopsy and puts some funds away for the procedure. The written instructions must be available to the family before death occurs.

3) The family should discuss the wish for an autopsy with your family doctor and a local pathologist so that at the time of death, the patient’s wishes can be quickly expedited. At the time of death the local pathologist should contact our pathologist Paula Pierce or Tom Grier for tissue preparation procedures, and shipping information. Local tissue harvest usually ranges from $300-1,500 depending on what is required. We cannot control this cost or help with harvesting costs.

Ship to:  Excalibur Pathology Inc.  5830 N Blue Lake Dr. Norman, OK 73069 Phone: 405-759-3953 Fax: 405-759-7513

Questions: Thomas Grier VP and Study Administrator 218-728-3914 donatebrain@gmail.com

4) Ship harvested tissues to Paul Pierce at Excalibur Lab in Norman, Oklahoma. This lab will accept any formalin fixed tissue, or paraffin blocks. For fresh tissues or frozen contact Tom Grier before shipping. Paula Pierce will prep all materials in paraffin blocks and then make slides for staining. The cost of this is usually about $1000 (For pre-qualified patients this is free.) If Paula sees anything of interest she will ship slides to:  Tom Grier for special staining.

5) All work by myself is free. The only costs that might ever be billed to the family is for the actual cost of special reagents or some kind of special requested pathology requiring special tools and time.

What tissues are best? We prefer several paraffin blocks from different regions of the brain, also heart, bladder wall, testicle, CSF

Summary – Written wishes, Tissue Harvest, Tissue Prep, Staining

  • In summary all patient’s/families must pay for tissue harvest. (Often the local hospital or insurance will pay for this)
  • The patient’s family must know the entire procedure, the expected costs and the importance of the data and research. A family member that has not been properly informed, or does not understand the research, often delays tissue harvest to the point where it is too late.
  • Once formalin fixed tissues are put into paraffin blocks they can last easily 10 years.
  • FISH stains are as specific as PCR and give exceptional visual results.
  • Any donations above and beyond the minimal costs can be donated to the Paul H Duray Pathology Fellowship Fund.

Contact Information

Paul H. Duray Pathology Fund Study Administrator:Thomas Grier – Molecular Interrogation 8427 Benelli court Naples FL 34114 United States

Excalibur Pathology Inc Attention: Paula Pierce 5830 N Blue Lake Dr. Norman, OK 73069 Phone: 405-759-3953 Fax: 405-759-7513

Click Here for Patient Consent Form

Update:

Dr MacDonald has retired from research. Thomas Grier, M.S. is still wanting to continue this research but to do so, would need to charge each patient about $3,000 per patient. Unless someone is willing to be a benefactor for their research. Also since Dr Alan MacDonald retired from research he will need someone who is skilled at Fluorescent microscopy and FISH stains.

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