What Does it Mean to be an Organ Donor for Science?
In 2016, our youngest daughter, Harper Howard, passed away. In the midst of chaos we made the most valuable contribution to science we could think of, we donated our daughter!
- You can PreRegister
- You have 6 hours from time of death before organs need to be preserved
- Open casket service is possible because of how delicately they removed the organs.
“Be comfortable being uncomfortable.” ~Penny Howard
Brain Donation Registration
International Brain Registration Options
CONTROL BRAINS NEEDED
It is vital to collect brains from individuals without brain disorders. These brains are called control brains. Control brains are a necessary part of research. Please consider being a control brain donor today! For more information you can contact 800.BRAIN.BANK (800.272.4622)
VARIOUS DISORDERS ACCEPTED
Psychiatric Disorders
- Bipolar disorder
- Borderline personality disorder
- Depression
- Obsessive compulsive disorder
- Post-traumatic stress disorder (PTSD)
- Schizophrenia
- Tourette’s syndrome
- Eating Disorders (anorexia nervosa, bulimia nervosa, and binge-eating disorder)
Neurological Disorders
- Amyotrophic lateral sclerosis (ALS)
- Corticobasal degeneration
- Frontotemporal dementia
- Huntington’s disease / HD relatives “at risk”
- Lewy body disease
- Multiple sclerosis (MS)
- Multiple system atrophy (MSA)
- Parkinson’s disease
- Pick’s disease
- Progressive supranuclear palsy (PSP)
- Seizure disorder and epilepsy
- Traumatic brain injury (TBI or chronic traumatic encephalopathy)
- Myalgic Encephalomyelitis (Chronic Fatigue Syndrome)
- Restless legs syndrome (RLS; Willis-Ekbom Disease)
- Dystonias
Neurodevelopmental Disorders
- Asperger’s Syndrome
- Batten’s disease
- Down’s syndrome
- Fragile X syndrome
- Intellectual disability
- Pediatric developmental disorders (PDD)
- Tay-Sachs disease
- Rett syndrome
- CDKL5 Disorder
- FOXG1 Syndrome
CDKL5 Tissue Donation Process
This will be the most challenging part of the entire donation process for CDKL5 families. It is my suggestion that you think about how this could be carried out prior to time of death. Preparation will be key in making this process smooth.
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- You have 24 hours from time of death for skin biopsy to be received by laboratory!!!!
- Secure doctor willing and able to obtain a skin biopsy
- Find out about hospital regulation regarding outside doctor obtaining biopsy (Harper had to be moved to funeral home for biopsy to be obtained)
- Designate a person to mail sample to lab following instructions below. OVERNIGHT EARLY MORNING DELIVERY is a small price to pay when you get only one opportunity to make this happen!
Sanford Consortium Instructions for Skin Biopsy…
Harper’s Legacy
If you have any questions please do not hesitate to reach out to us: hope@hope4harper.com