Understanding Hashimoto's Encephalopathy 2016 Edition:
An Expanded and Updated Guide For Patients, Families, and Caregivers
– Now Available on Amazon
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Tissue Donation

One of the greatest gifts that we can give to future generations it the gift of knowledge.

By donating your tissue (brain and spinal cord), serum (blood) and cerebral spinal fluid (CSF), your donation may help to further research into Hashimoto’s encephalopathy or other diseases.

If you would like to make such a donation, please see the steps suggested below which are designed to expedite the process for your family in the event of your unexpected passing.

 

  1. Choose an organization or facility
    Many research hospitals, especially those associated with major universities, maintain tissue banks. An internet search can help you identify a suitable institution.
  2. Some donations may not be accepted
    There may be circumstances in which a donation cannot be made. For example, bodies that have suffered extensive trauma or that have suffered from a serious contagious virus like Creutzfeldt-Jacob disease or HIV may not be accepted.
  3. Full body donation
    Be aware that this option may prevent your family from having remains to hold a funeral service. Tissue banks will often handle cremation but the remains may not be received for some weeks. It is best to contact the institution in advance of your passing to discuss the details of your donation.
  4. Notify your family and doctor of your decision to donate
    It is important to discuss your plans with your family in advance of your passing to ensure that your wishes are carried out correctly. This gives you and your family the opportunity to discuss everything that needs to take place to make a successful donation. If there are any concerns, you can discuss them with your family to ensure everyone is comfortable with the process. Not discussing your final wishes can delay or even prevent your donation from being successful.
  5. Discuss funeral options
    Making a full-body or tissue donation will likely prevent your family from holding a memorial service with your bodily remains present.  For some loved ones, this may be upsetting. Talk about your wishes with them, and explain the reasons for donation. If the presence of remains at the service is important to them, they can hold a memorial service once your remains are returned. It may, however, be some weeks before remains are returned. Talking about this process in advance may help your family better understand your decision and feel comfortable with your final wishes.
  6. Have an alternate plan 
    Often we cannot anticipate the circumstances that will lead to our death. If there is excessive trauma to the body or decomposition, you may not be eligible for the donation program. It is best to discuss a second option and plan for the possibility that your donation may be rejected for any reason.
Giving Assistant

Donate to HESA via Giving Assistant when you shop online.

 

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AE Alliance
"The Autoimmune Encephalitis Alliance promotes collaboration to improve care, find a cure and create community so that no one faces autoimmune encephalitis alone.


The Encephalitis Society
"The Encephalitis Society is an International organization providing information and support for all causes of Encephalitis."


Encephalitis Global
"Encephalitis Global is a U.S.A. 501(c)(3) non-profit organization formed in 2005 as an alliance connecting encephalitis survivors and caregivers around the world."


Mark2Cure
Scientific literature is growing at a rate of more than 2 new articles every single minute. It is impossible for scientists to consume and understand the rapidly expanding ocean of biomedical literature. You can help biomedical researchers find the information they need to discover cures faster.


RareConnect.org
"Connecting Rare Disease Patients Globally"


RareDisesases.org
"Alone we are rare. Together we are strong.®"


Contact a Family
"For families with disabled children."


Madison's Foundation Provides information about rare diseases and connects parents whose children have the same rare disease.


NIH Health Hotline
Toll-free numbers from the National Library of Medicine's Health Hotlines Database.


HE Notebook - Wordpress Site
A great blog of an HE patient with a trove of information, personal stories, and links to medical studies.